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I Am At The End Of My Rope With This.


bamagirl

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:) During these adrenaline surges, I get pre-spell symptoms. First, I get very flushed and a sunburn feeling. Then I get a very tired sleepy feeling, then my vision starts to get very sensitive to light and I get overstimulated and everything makes me jump, like the phone ringing or someone sneezing. Then I try to sleep and I can't. My mind races and it literally feels like I took speed or something. Next I start getting lots of pvc's and my muscles get weak and tired. Finally, I get a full feeling either in my stomach or neck and then BOOM!! My heart races like crazy!! It goes to about 150-180 for a minute or two and then sometimes it will go down for a minute and then it goes up again. During that time, I can't move and my hands go numb. Afterwards, my whole body trembles and my teeth chatter but I am not cold. My blood pressure goes up a little during these spells but not much. After these spells, I am wrecked for about 3 or 4 months and bedridden. During those times in bed I will have more little adrenaline episodes kind of like the big one but not as severe. These little spells may happens 3 times a day, once a day every day or 3 times a week. I don't know if I will ever stop having these horrible spells. Does anyone else have spells like this. If so, what helps?
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That is not an adrenaline surge it is a chemically induced panic attack caused by the hypothalamus sending acth to your adrenals. I have the same thing..... They most likely aren't even pvc's or pac's unless they have been caught by ekg....quick fix to the problem get Valium. xanax, klonopolin, etc none of those worked for me reason why: does not work within the hypothalamus like valium. acth makes the alpha and beta receptors in your heart super sensitive to adrenaline btw. It's an entire problem with the hypothalamus-pituitary-adrenal axis. Pituitary sends CRH to Hypothalamus which in return sends ACTH to Adrenals, which in return is supposed to release "Cortisol" big problem is it does not. So you get another chemical instead..... so it keeps repeating and repeating and repeating the entire process which somehow epinephrine gets involved somehow acth just absorbs it and you have a fun hour.

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Guest Sandy Sims

I too had these "spells" to the point I made SEVERAL trips to the er--for sure I was dying. I just read your post to my hubby. He said," Yep! that was you exactly! My little mixmaster with chattering teeth!"

I found I was going into shock or adrenal surge from either high or low blood sugar--happening in VERY fast swings. It took TWO YEARS for anyone to find this tho!!! Fasting testing alone showed nothing!!!

More often my blood sugar was low--but lows are caused by highs--and can happen anytime. Excercise or stress makes lows worse and happen faster. Since adrenal surge IS stress this cycle can be very difficult to break.

IF you have adrenal surge it's pretty much impossible NOT to have some blood sugar issues along with it. And, it's pretty impossible to stop one without stopping the other--unless you drug yourself senseless--NOT a good plan unless you are 100% SURE you are NOT having hypogycemia since this is the way your body rescues your brain from starving!

Metformin (non-narcotic--non pyschoactive blood sugar drug) at night and diet have stabilized this for me. I HAD tried diet and this helped some but not completely--since eating small frequent healthy meals works OK during the day--but you simply can't do it while asleep at night.

My BP and pulse are now normalizing daily. Today I went to my body mass weigh in and had again regained 2 lbs of muscle mass without excericse -- that was being chewed up while in this adrenal surge process and is not now. Have also lost another 3 lbs of fat--mostly on my tummy. I will be retested for high cortisol in coming weeks--and hopefully--high levels will begin to drop there as well.

You can't stop surge if you blood sugar is dropping dangerously low--this is a normal bodily function to save you brain from starvation. You can't stablize blood sugar when adrenals are in play either. It's a really nasty cycle. Takes both stable diet and metformin--and rest.

[b]This was found by doing a glucose tolerance blood test WITH INSULIN LEVELS at all blood draws. Fasting tests alone showed nothing--A1C 3 month average testing showed nothing. ONLY this test WITH insulin levels showed this odd sort of reactive hypoglycemia.Glucose levels fasting and even during this test appeared near normal==but insulin levels were 10 times normal.

Metformin helps with this without causing more hypogycemia.

I keep posting this cause I keep seeing my EXACT same symptoms. IF you see that you get sleepy with low bp soon after meals--and get wired and skin burning symptoms late at night or when it's be awhile since you've eaten any carbs or sugar (salad and non-sugar eating may not count), you too may need this very common blood test and very common drug treatment.

BTW this is NOT to say that low blood sugar is the ONLY cause of adrenal surge--just that it's the most common since the two things tend to "feed" each other in this cycle.

Hope this helps someone.

Sandy

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Here is something I sent out to some of the ans docs, and endocrines, shrinks, several other people.

BTW the gentleman who also came up with this theory come claim it if you want it I'm not the only one.

Hello,

This was sent to you because I believe you could do something with this information I am sending you. I am no doctor, but believe I put together an important piece of information that has been missing in treatment and possibly finding a cure for Hyperadrenergic POTS

I was diagnosed with a Subform of Dysautonomia called postural orthostatic tachycardia syndrome via Tilt Table Test.

The acronym is POTS. There are many forms of POTS

For those who do not know what Dysautonomia is there is a book that is readable online located at http://www.ndrf.org/NDRFHandbook.htm

Hyperadrenergic (hyperadrenic) POTS is the form I'm going to go into.

The Hyperadrenergic form of POTS is the one I believe I have.

Dysautonomia is a malfunction of the autonomic nervous system. Your autonomic nervous system controls "ALL" body functions that you do not control yourself. Examples, are (Heart Rate, Blood Pressure, Breathing, Digestion etc.)

I ran across someone on the internet via www.dinet.ipbhost.com

That site is a message board where Dysautonomia patients all around the world trade information with one another.

This man has the same exact symptoms I have no difference what so ever.

We both lost a tremendous amount of weight in a 2 month period unexplained. Example: 40-60lb's prior to POTS. He has GERD, I as well had GERD but got that taken care of with the Nissen Fundoplication surgery.

The weight loss happened when I was of 14 yr's of age and I still have not gained it back I am 127 lb's 5ft 11in. I work very hard at even maintaining my weight. My weight still drops just for your information.

We both have high blood pressure and heart rate shoot up upon standing.

bpm: at the least a increase of 30bpm

bp: usually a systolic rise of 30 and diastolic rise of 10-20

Very bad days heart rate when standing can go to 180bpm and blood pressure 240 over 140

We have the same episodes which sound like an "emotional panic attack". It happens slightly different in both of us but ends with the same result. My attacks start with me becoming extremely nauseous for about 15 minutes hands get clammy then my heart takes off racing sometimes in the 200's range and blood pressure skyrockets. Then my arms and legs get pain shooting through them. Then they go "Completely Numb" kind of like injecting them with Novacaine. Then I start shaking uncontrollably like a seizure except it is not.

The hearts beats are very strong beats as well and it always feels like it skips and throws in extra beats as it is going on. When the funny things with the heart happen it just knocks the wind out of me, quite possibly paralyzing my diaphragm from the strong aortic pulse since I am so skinny.

Difference in Age I am 18 the other man is 32.

Somethings to be noted.

1. We both have always had bulgy veins when these "panic" episodes happen they constrict prior to them.

2. We both have dilated pupils constantly, mine was first noticed at the age of 6 years.

3. The POTS was not a sudden onset in either of us it happened gradually.

4. POTS symptoms usually go away towards the end of the day but the "panic" episodes usually kick in towards the end of the day.

What I'm going to go into may sound insane but here it goes.

The 32 yr. old man from phoenix, Arizona has had all of his tests done and all add up to the information I am supplying below.

Note: I have not yet had the opportunity to have my blood work taken, but I believe mine is going to have the same result, since the symptoms and onset of this "syndrome" were identical, besides the age. It just happened to hit me faster then him.

I believe If you were to check my Cortisol in the morning it would be in the normal range. Whereas at night time it would be way too low.

What I want to explain is my episodes usually occur after I have been up for a while but my Pots symptoms almost disappear. What I would like to suggest is there is a neuro-endocrine disruption, it may be infact adrenal insuffiency.

My point is something is going wrong with the communication with the Pituitary and the Adrenals, it could also be between the Hypothalamus and the Pituitary. It could even be but (not likely) the Central Nervous System and the Adrenals.

The major problem with fixing this is "Most" Doctors are not schooled to recognize "Adrenal Fatigue". Most Doctors only believe in Addisons Disease. "Hyperadrenic" in my opinion would mean the adrenals are overactive or that my vascular system is over responsive meaning it has too many receptors. But the cardiologists can't see the beta receptors. I am on metoprolol and it has not done a thing for me. So I think the receptors in the heart are kind of ruled out. But think as the beta receptors as hair in your nose that make you sneeze, here is the kicker beta receptors can be sensitized and desensitized in a matter of minutes to hours or days.

What this suggests is that some antagonist is circulating in my plasma. I believe this to be Adrenocorticotropic (ACTH), ACTH stimulates the adrenals. Why so much ACTH? because the adrenals are not pumping out enough Cortisol they are shot and worn out. So the Hypothalamus sends out more Corticotropin (CRH) to the pituitary which in return the pituitary sends out way too much ACTH. so the adrenals just keep getting hammered. Because they can't make enough Cortisol

they get hammered more. The only thing that they are able to produce is Dehydroepiandrosterone (DHEA). So ALOT of DHEA sulfate winds up circulating in the plasma. by alot I mean alot probaly about 4,000% higher then normal. The Adrenals make the Hormones that help you hold on to water. A Good example is the hormone named (Aldosterone). So you see, I can be Hypovolemic because the adrenals are shot. that's just on top of all of this. Now here's another Double Whammy, beta receptors in the heart grow out of control due to the elevated ACTH so now I'm supersensitive to adrenaline and alpha receptors.

Here is my theory on how those "chemical induced panic attacks happen" at night time usually after I eat. Cortisol stimulates the breakdown of proteins and fats, and provides for the conversion of some amino acids into glucose as needed (gluconeogenesis). If the diet is deficient in protein, or if digestion of protein is inadequate, extra cortisol must be produced to break down muscle tissue for needed amino acids.

So if I need cortisol to break down protein and fat, and I don't have it, I will get more ACTH, Epinephrine, Norepinephrine, DHEA, etc. Which in return activates the sympathetic nervous system "fight or flight response" causing a panic attack on the spot.

I believe this theory will hold hot water for I. if I have the following blood tests done same draw morning and night. Which I will shortly have done.

ACTH

DHEA

Testosterone

Cortisol

Aldosterone

The man In Arizona's ACTH was very high, his DHEA was about 4,000% over normal about, his testosterone was lower then normal and his cortisol when waking was 20 and at night was between 1-0

There are most likely more hormone tests that should be done but I am no doctor just been doing a lot of research with a man from Phoenix, Arizona. I think this is a major piece of the puzzle to curing Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

Things I am currently looking for answers to:

1. "Narcotic" pain killers like morphine sulfate, all seem to get rid of the POTS symptoms example extreme blood pressure and pulse rate changes upon standing. (Does Make Me Extremely Loopy Tho".

Answer Found: Morphine Sulfate is a HUUUUUGE reuptake Inhibitor of 5-hydroxytryptamine (5-Ht) and 5-hydroxyindoleacetic acid (5-HIAA) levels aka serotonin. And I tried an ssri did not do anything but drastically raise my blood pressure.

2. diazepam seems to have a different affect on me, my eyes constrict properly. I actually have energy. My Brain fog is gone. I also don't have those nightly "chemically induced panic attacks"

Answer Found: Diazepam works within the Hypothalamus whereas other benzos do not.

There is a legitimate argument that could be supplied. This argument could suggest it is not adrenal fatigue but a problem with the Hypothalamus-Pituitary-Adrenal-Axis (HPA Axis). This could be caused by a number of things including autonomic neuropathy. Reason why this argument could also hold hot water is ACTH is very elevated with Cortisol. So this would be a normal response to stress. The reason I'm not trying to back this argument is because it would lead to a panic disorder that would be close to impossible to escape until the problem is fixed.

This theory is strictly going into what is going on with the adrenals, I do believe there is an Autonomic Neuropathy in all hyperadrenergic POTS Patients.

I figure a Doctor who takes interest In Dysautonomia, Could probaly do something with the information I have provided.

My name: John Jordan

Address: P.O. Box 35667 Houston, Texas 77235

Telephone Number: 713-410-8958

Email: easymarketer @ gmail. com

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Guest tearose

bamagirl,

I have blood pooling which causes a similar surge and I do not have anxiety attacks.

I do think unless you get these under control you can become kind of "burned out", become susceptible to other things like colds and virus and if you aren't sleeping soon you will find yourself in a relapse also known as a "potshole".

Unless you have been diagnosed during this event, don't assume anything! I was diagnosed with hyperadrenergic POTS years before they were able to "capture" a PSVT during a surge. So, on top of barroreceptor reflex issues, and lymphatic issues, I probably have a heart funkyness going on as well.

How to manage? First, Do everything you can to avoid these. When that fails, if you are prepared I trust you will be able to manage.

Here is what I do: Sit down immediately, if you are still racing, draw your legs up to your chin and hold them, if that doesn't help, lay down. This will immediately stop the racing heart. Then start with electrolytes, sip about 4-6oz of water with a packet of electrolyte mix. You should feel nearly normal in a few minutes. You will also feel like you just ran 100 miles and will probably feel like taking a nap. Do so. Then re=think your compression levels, your sodium and fluid intake and see if you can avoid this. If you are on medications, you should rethink if you have become tolerant and need to see the doctor.

You could have a heart issue, a bp issue, a barroreceptpr issue, an one time spell, it could be you just caught a cold and this will resolve once you are done fighting the cold.

best regards on your healing process,

tearose

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I was getting these spells almost daily last spring. They were not like any panic attack I had ever had before. But I did try Valium, Xanax and Ativan (not all at once!) over a period of about three months. In my case the Benzo made it worse. I felt more groggy and less capable of dealing with the surges, which still came regardless of the meds.

Looking back, I'm guessing these were related to blood sugar levels in my case. I learned during that time that I was having wide fluctuations and lots of low blood sugar adrenaline rushes. It was a vicious cycle that lasted a long time. I have since been on a very strict hypglycemic diet and am doing much better.

Nonetheless, yesterday I began getting some of the same surges and that facial sun burn feeling that I had last spring. It really threw me because it had been so long. Yet the same sensations of teeth chattering burning skin etc . were just as pronounced. My blood sugar was level (all day) so that was not likely to be the culpret. In my case I am in the midst of changing a thyroid dose (and recently, 2 months, off of BCP) so it could be I am going through some hormonal changes that will cause episodic ANS flares.

My therapist doesn't believe these are panic attacks in my case. And indeed I may never know the cause or cure. For now then, I am trying to take this one moment at a time. Not jumping to the conclusion that this will get bad like before. But to feel each sensation as it arises and cope best I can.

Take care of you. I know its hard and I hope you feel better soon.

~EM

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hi, i get those exact same spells as well. only i feel tremendous amounts of "panic" or "doom" - do you as well? i do know that what i experience is not a panic attack, as i do have those as well, but it is completely chemical.

in fact, the reason that i was diagnosed with pots was because i had one of these episodes immediately after my tilt table test, after i was lowered at the end of the isuprel infusion. i tend to have these episodes after my heart rate has been elevated, like from trying to exercise, and as it begins to slow down, it kicks back up to around 180-200 and i have all the symptoms you describe. i was sure i was having an svt, but my cardiologist had told me that, at least during the tilt table test, i was having a sinus tachy. so he diagnosed me with pots, despite the fact that i didn't have a rise in heart rate or drop in blood pressure during the test, because he did not see this as a heart problem, but an autonomic dysfunction.

i doubt my diagnosis, because it is not technically "pots" and don't really know what is going on with me, but i do think that these problems are related to a sensitivity to norepinephrine. i have not tested for high norepinephrine levels through 2 urine tests, but i do have low normetanephrine, which means i am not really metabolizing the NE. have you been tested for this??

i don't have any suggestions as to how to stop these episodes, other than medication. i don't take any yet for them - tried xanax and i didn't like it, hoping to try klonopin next. fortunately for me, when they pass, i am usually only affected for about a day or two. if you are out for months, you really need to pursue further treatment. make sure you have all your neurotransmitters and their metabolites tested.

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These wouldn't be considered normal panic attacks anyways, I'm pretty calm the entire time they are going on. I've been to the ER several times one time blood sugar was high another blood sugar was low. One time low potassium etc. It all comes down to the HPA-Axis.

and as said It's not a head problem/psychological, It's ans problem thats screwing with the HPA-Axis.

And you should be fine to take toprol, Will it help with what is happening? no. It may help the pots tho.

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<_< During these adrenaline surges, I get pre-spell symptoms. First, I get very flushed and a sunburn feeling. Then I get a very tired sleepy feeling, then my vision starts to get very sensitive to light and I get overstimulated and everything makes me jump, like the phone ringing or someone sneezing. Then I try to sleep and I can't. My mind races and it literally feels like I took speed or something. Next I start getting lots of pvc's and my muscles get weak and tired. Finally, I get a full feeling either in my stomach or neck and then BOOM!! My heart races like crazy!! It goes to about 150-180 for a minute or two and then sometimes it will go down for a minute and then it goes up again. During that time, I can't move and my hands go numb. Afterwards, my whole body trembles and my teeth chatter but I am not cold. My blood pressure goes up a little during these spells but not much. After these spells, I am wrecked for about 3 or 4 months and bedridden. During those times in bed I will have more little adrenaline episodes kind of like the big one but not as severe. These little spells may happens 3 times a day, once a day every day or 3 times a week. I don't know if I will ever stop having these horrible spells. Does anyone else have spells like this. If so, what helps?

Have you had a glucose tolerance test WITH insulin levels checked? I've had the exact same issues and, luckily, Sandy tipped me off to getting this test done, and SURE ENOUGH, my insulin levels are 3 timew what they should be... just a suggestion... seems a lot of us have a lot of the same symptoms and it might be worth looking into... :huh:

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Wow. Im glad I found this post since ive been going through these for days now. Went into a POT hole about three weeks ago - dizzy and the usual fatigue, but give me that any day over the adrenal surges/autonomic storms or what ever else you want to call them that have come on since I fainted.

When i was bad last time id get these and I had one at the doctor's office. they gave me beat blockers then and sometimes they can help although they dont help the dizziness.

Lately, it would come on about 20 minutes after I stood or walked anywhere. and then lasted all day until yesterday it felt like i just ran out of norepinephrine. its almost like all of a sudden the knot in my stomach was gone and my tachy went down, hands stop shaking, suddenly felt warm rather than fluctuating from hot sweaty to cold all the time.

How do you guys cope with feeling that jittery, jumpy and uncomfortable? for me the tachy is the least of the problems! My blood pressure generally goes up during these episodes and my thirst gets incredible. But I cant relax and feel very jittery. Its very similar to what a relative of mine experienced with an overactive thyroid.

My doctor did a study of POTs patients and found that out of 14 nearly all of us had nearly no function NET - Norepinephrine transporter. But what I dont understand is why that wouldnt just mean that beta and alpha blockers would just stop the adrenaline/norepinephrine so there wouldnt be a problem?? If our pots results from a hyperadregenic state - an over active reaction to standing surely by dampening those chemicals in our body it would help things??

I am on one beta blocker a day and it only seems to help sometimes. Infact im pretty sure the other med im on is actually making me worse (similar to midodrine).

Anyway - my history with POTS - had slight symptoms that gradually got worse until an abrupt arrival of very bad symptoms one night when my heart just went nuts for no reason and I began trembling and stuff. Went to ER - no idea. Took me a year to get diagnosed with POTS but by then I was already feeling better and appeared to be coming good.

I lost 10 kg in a month with this original onset.

Symptoms seemed to get kickstrated after i returned from a holiday but i have no idea why.

Symptoms improved to the point where it was only mildly effecting me - just dizziness and a bit of fatigue.

Then i went overseas again and as soon as I got back the fog descended - brain fog, vision problems and dizziness situation. I eslf medicated with licorice at this time and after around a month or two i began to feel better. I was able to work the entire time, although it was quite hard.

I was so well after about three months that I began an exercise program - i was infact so well that I competed in a 3 km run earlier this year and was swimming a km 3 times a week!

Then i went overseas again and on my return Ive come down with a very bad case of POTS. Dizzy all the time for three weeks, and then i had some improvement, then i fainted and since then ive been pretty much in what you'd have to describe as the worst POT hole of all.

Has any one here had experience with Clonidine or a dual alpha/beta blocker??

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I used to get these same symptoms frequently when first dx?d with POTS two years ago. They were all day, every day and I was barely able to get out of bed for 3 months. Now, thankfully, they have significantly subsided. I had almost every test mentioned in the previous posts and they turned up nothing. I was on Toprol and Florinef - slight relief but not much. Then added Klonopin ? hard to say how much better the symptoms were because I was zonked out on my mind half the time ? but it got me thru the day so I continued taking them.

When a bad spell hit, sometimes the sitting knee to chest and increasing salt/fluids combo worked. Other times, it was into bed with cool cloths over my burning face, neck and chest to sleep it off for hours or days.

My POTS doc then referred me to a cranial osteopath as he?d had much success with the additional treatment he offered. Without me saying anything, after the initial exam, the osteopath starts rattling off the long list of strange symptoms I?m having. He mentions that my hypothalamus and numerous nerves and vessels in my head and neck are compressed and how this could cause these symptoms. Very interesting.

After a dozen or more treatments, I?m much better. Still see the POTS doc as well. Not sure what has helped most ? the meds, lifestyle change, osteopathic treatments, or just time ? but just thought I?d share.

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Mine are almost the same to a T but I do not have the sunburn feeling. I take an extra bit of beta blocker to help bring my rate down. It won't stop by my lying down or trying to break it. I've worn monitors and it shows sinus tachycardia during an episode. It slows on its own. My hands sweat yet my teeth chatters and I feel cold. Sometimes I just know it is coming on. For a long time I was told it was panic, but I've had panic attacks and this is not like that.

I've been checked for pheo, had so much blood drawn, sugar/insulin etc. ekg's, echo etc. My cortisol is a normal pattern, but low. They say borderline for adrenal insufficiency. My DHEA is low normal so I don't fit a pattern there.

Surely we can all sympathize with you. Wish I had some great advice to offer. I do find though that that low carb eating has helped as well as reducing sugar even though my levels are fine. If I overeat I notice I may start to feel the feelings come on, think it may have to do with pressure on the vagus nerve. When my reflux flares I have more episodes too.

My D.O. dr has probably helped the most.

Try to look for the little comforts for yourself and keep positive. Soon I bet you will see longer stretches of feeling better again. Sometimes it just takes a while to bounce back to where you were before. Hang in there. :)

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Hi,

I have those 24 hours a day, day and night. I need meds to sleep because of it. Dr Goldstein from NIH told me that it is caused by the extremely high adrenaline levels. It's not panic attack but caused by orthostatic intolerance.

Wow! I feel for you!!! Ive had these for about seven days in a row and I was at the end of my tether. Your an inspiration really!

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:huh: During these adrenaline surges, I get pre-spell symptoms. First, I get very flushed and a sunburn feeling. Then I get a very tired sleepy feeling, then my vision starts to get very sensitive to light and I get overstimulated and everything makes me jump, like the phone ringing or someone sneezing. Then I try to sleep and I can't. My mind races and it literally feels like I took speed or something. Next I start getting lots of pvc's and my muscles get weak and tired. Finally, I get a full feeling either in my stomach or neck and then BOOM!! My heart races like crazy!! It goes to about 150-180 for a minute or two and then sometimes it will go down for a minute and then it goes up again. During that time, I can't move and my hands go numb. Afterwards, my whole body trembles and my teeth chatter but I am not cold. My blood pressure goes up a little during these spells but not much. After these spells, I am wrecked for about 3 or 4 months and bedridden. During those times in bed I will have more little adrenaline episodes kind of like the big one but not as severe. These little spells may happens 3 times a day, once a day every day or 3 times a week. I don't know if I will ever stop having these horrible spells. Does anyone else have spells like this. If so, what helps?

Hi, I am brand new to this forum. I'm almost positive that I have some form of dysautonomia but I haven't been able to get my doctors to take me seriously enough to test me for anything. I get similar episodes to yours. They usually happen at the end of a long day when I've done too much and/or had frequent low blood sugar. This is what happens:

My vision gets choppy and sensitive to light

My nerves get hypersensitive to light and noise

I start to feel nauseous

I get really cold and nothing warms me up but my feet and hands get sweaty

I feel exhausted but I can't sleep because my mind is racing and I feel like I did drugs or something that altered my mental state

My whole body starts trembling

My heart is pounding

I'm short of breath

I have to just lay perfectly still for two hours or more and then finally I fall asleep

The next day I have to rest all day to recover or it will happen again

Does anyone know what causes it?

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