Doctors are Still Stumped

[Kujiforo]

I posted on here some months ago when my condition first started after a bad reaction to the drug Elavil. After going to what, three cardiologists, one of them strongly believing that the drug triggered this illness I've been dealing with. However, the most ignorant reply I have ever gotten from these doctors is really ticking me off: "Sometimes the heart just go fast!" They scream at me. One of them even thinks I'm a loony. I KNOW that I am not.

The last one I went to, though the holter and echos turned out fine except for my exceptionally fast heart rate at rest (around 95-170, with the highest marked being up of 190) and some PVCs, mentioned that either gastrointestinal problems could contribute, or (what he more strongly believed) that my adverse reaction (I think thats the word he used) to Elavil may have triggered DYSAUTONOMIA. Even still, they never give me meds or solution and I am suffering daily with frustrating symptoms.

I am female, 24, used to work out daily and was around 150 lbs... This illness has stopped my exercising cold, and after eating I am bloated. My body looks slimmer, but the scale shows I have gained nearly 40 lbs. (Is that weird?). I have never smoked or drank in my life (they always ask me this). I DO have PCOS with cysts that rupture frequently and at some points believed that perhaps those bursting all the time was causing the lot of my symptoms, though every logickal reasoning points back to Elavil.

I took the Elavil for some headaches I had been having, as prescribed by my doctor. About a week and a half later, I was laying down watching TV and my heart rate shot up to 200 bpm. The ER people said that my body was treating the low dosage of Elavil as overdose. At another point earlier, my left side of my body went completely numb, and I couldn't breathe, but we did not think to check the medications I was on at the time. My family told me I was having "Panick attacks". After finding this out from the ER, which makes sense as my body reacts badly to many medications, they told me to cease the Elavil immediately, so I did.

Thinking all would go back to normal, I was pretty happy that night after being released. Two days later I was back in the ER for the same symptoms. Chest pain, heart near 200 bpm, short of breath. EKG showed normal save for the fast heart rate. Thy sent me home without so much a care. Other problems started showing: faintness, dizziness, weakness in limbs, bowel problems (diarrhea), headaches, changes in vision, cold clammy sweats, stomach problems (episodes occurring strongest after I eat),pins and needles pricking my body (like electric shocks), widespread pain in ever place you can imagine (mostly in my arms, shoulder, knees, back), esophageal spasms, heart rate shooting up to 170's during rest, inability to exercise without fainting, blood pressure bottoming out (lowest marked at 70/50-something or so), tingling in my extremities, slurred speech at times, feeling confused (mostly when bp is low), and other bizarre symptoms.

These come in waves, and while I feel mostly drained all day no matter how much I sleep, the worst comes when a spell hits with any number of those symptoms.

I have had countless x-rays of my chest area, countless EKGs, and 2 Echos - my heart looks healthy and normal. Just my heart rate jumps up. I also have had ultrasound of my liver, kidneys, pancreas, and gallbladder - all normal. I am going for an endoscopy of my stomach soon, but can my stomach really be causing all of this? Thyroid checks fine, no diabetes or anemia. Blood work always looks good, they say.

It has been about a year now, and though some symptoms have lessened, new ones have appeared. Living is a struggle. It is a very disabling disease and I cannot work. I have no insurance. I'm 24...I shouldn't be having to deal with this at my age. Yet I cannot live with all of these symptoms and doctors are sending me home without any medication or anything to help, and shaking their heads in confusion, or, saying I am insane. I just post this here because the word dysautonomia was mentioned to me recently, and I am running out of straws to pull. I just really do not know whats wrong with my body.

Please...any help or advice? This illness is driving me crazy. It makes me more frustrated than anything, as it interrupts everyday life. The only thing having me holding on is God Himself.

[soccermom7]

Oh forgot to mention, you needs to get quality sleep.  The days I sleep well I do not get attacks.  If I go three days without 6-7 hours of sleep each night, I will probably feel like I will get one of those "attacks".

[soccermom7]

I had written a very long response to your posting but my computer battery went dead yesterday.  I will summarize my recommendations for you since we seem to have exactly the same "undiagnosed" condition and I too am out of the workforce (1 year now).  I am 37 yrs old and started with this 2 years ago during my  7month of pregnancy.  I have been hospitalized twice and went to the ER about 15 times, always sent home with the diagnosis of "panic attacks" (even though the attacks had happened when I was having a good day).

I was diagnosed with Hashimoto's thyroiditis (hypothyroidsm) when my daughter was 6 mo. old, but my endo says the "attcks" are not due to my thyroid.  It was just a coincidence that the "attacks" and the hypothyroidism happened at the same time.  Alot of people here mention POTS, but I believe in your case you are dizzy as a side effect of another disorder.  I too felt dizzy when standing suddenly so the only remedy is too get up slooowly when sitting.

After checking for any tumor on the adrenals (catecholamines & VMA), B12 levels, brain & neck MRI, pelvic CT, other hormone levels (cortisol, ACTH, etc), tilt test, etc. and if they all come back normal as mine did, then you should also get a 5 hour oral glucose test (OGTT).  I had a OGTT that came out "flat curve" at 80.  This meant that even though I have always been hypoglycemic I was now insulin resistant (this happens also to women with PCOS you said you have).  My endocrinologist said to STOP eating sugar and only have LIMITED carbs (only green veggies and berries for fruits) and have six snacks a day instead of three meals.  Only drink water (NO JUICE OR SODA).  I only have one glassof 2% milk a day.  I also stopped drinking coffee until my "attacks" subsided.  

I was 25 pounds overweight (5'4" large build and was 155 lbs) and lost 10 lbs the first month with no effort b/c I ate all day every 2 hours and always felt full.  The incredible thing is that my stomach pains, diahrrea, and panic or "insulin attacks" were less and less.  I lost another 7 pounds the next month.  Presently I eat all kinds of foods just watch the portions of rice, pasta, etc (the "bad" carbs).  I don't eat alot of sugary foods since they make me sick anyhow.  I discovered Breyers no sugar added icecream or Dannon activia light vanilla with fresh bluberries is great for my sweet craving (and it is healthy!).  So count your carbs like diabetics do (not sure what the limits are, but I tried not to eat more than 15 carbs per snack and some snacks were protein only like cheese so they have 0 carbs.  Also eat the protein FIRST and then the carbs and never have a snack/meal that is carbs only, you will get an upset stomach and gassy.

I had been given a diagnosis of "metabolic syndrome" but I did not fit all the characteristics such as the increased LDL (lipid profile).  Anyhow the treatment for metabolic syndrome is the same I am recomending to you to eat less but more frequent, stay away from bad carbs, and loose wieght.

I too used to do alot of exercise and I am not currently, but it is in my "get better" plans.  Currently I am dealing with some pinched nerves in my neck and serotonine imbalance.  This is all probably linked (stomach issues, nerves, energy, metabolism, nutrition).  That's why I have been on a path of discovery to see what foods and meds make me feel better and which do not so I avoid them.  For example I can take SSRI but not SNRI for my serotonine imbalance (I get a very bad reaction).  I also discovered on the internet that I cannot consume Dextromethorphan since it will react with my SSRI and cause "serotonine syndrome" which I think I have had.  Every time I went to the ER I was taking a cold medicine ( i get fregent colds) and I was taking an SSRI, why no ER doctor told me this before - I am clueless???  They all said I had a panic attack, which made my sort of depressed for a while.  I was sure I was not depressed but that something was happening to me especially about 1 hour after eating.  I had the same "attacks" you were getting except that my HR and BP shot up ( my HR was always over 100 and my BP went up from 115/75 to 150/100 while sitting).  The ER doctor did not think it was so high but I always told him it was high for my norm!  Alot of people made me feel I was making this up maybe to get attention, but I am not like that and never have been.  

I also think you should get a good internist, an endocrinologist and maybe a neurologist.  I was thinking of going to Mayo or Clevland Clinic for a full workup if I did not get better but I do feel better since I have lost weight.  Try it out and see if it works for you.  Just one final thought, I used to worry about everything....I have three kids (15yrs thru 2 yr old) and I have alot of "issues" with each of them, they have different activities and needs - even just getting them to watch the same channel on TV without fighting!! but I try to just relax and not get mad over everything and enjoy them, life is SHORT.  At least now since I am not working oustide the home like I did for 15 years, I do get to spend more time with them.  I too need to work soon (my savings are being depleted) but I don't think I can handle a "high stress" job like I did before.  

Also, I have no problem with psychiatrist, I did go to see some, but I knew that the anxiety was caused by a physical problem not vice versa.  You should also get a good psychiatrist who is not only interested in medicating you but in finding out what is causing the attacks.

Good luck!

Soccermom7

[Kujiforo]

Just had one of my worst spells today. Arms went weak, that crushing pressure of not being able to breathe, then the chest pain and widespread aches like someone had punched me in the ribs. Throw in excessive sweating and dizziness, and we have one of my typical HERE WE GO AGAIN spells. Now it has just left me feeling weak, tired, and disoriented with a migraine to boot. It can sometimes cause those spells so horrible, though I usually do not have such bad spells on daily basis (usually once a week to once every 2 weeks). Just thought I'd rant a little about that. I should be more careful about popping up and down out of my chair, which is what triggered it (especially after I had just eaten). I also notice I get frustrated and angry to the point of yelling when I have these, because it interrupted something important of mine... I need to learn to control that when the spells come on, but sometimes I'm so angry at it, its really hard not to vent vocally. I'm not stressed. I forgot I even had a problem today because it seemed to distant, but it hit me that suddenly, a bad spell, I guess, a calm before the storm kind of thing. Other than the one bad spell I have felt better today than my usual.

Can POTS (or other dysautonomia) cause your throat to feel strange, like cold or "full"? Is that linked to some stomach problems it could cause? It still feels hard to breathe...I get that breathless feeling almost constantly now, and I notice I have a bit of chaotic breathing (I'll hold my breath or start breathing faster or not as deeply, at random) habit I'm trying to fix, but it seems like I do it subconsciously. I don't know if that's a dysautonomia regular symptom or not.

[enzymelover]

   Some of my son's symptoms from that list were lessened or disappeared after discovery of his hormone deficiencies, and replacement of some of the missing hormones- specifically  cortisol and thyroid. Loss of appetite, weight loss, severe nausea, light sensitivity, feeling cold, hypothermia, constipation, and feeling wired are no longer a problem.
         Symptoms that have improved greatly, but that he still has some trouble with, include lightheadedness, headache, postprandial hypotension (with larger meals), bloating and indigestion, food sensitivity, heat intolerance, low blood pressure, shortness of breath, sleep disorder (increased need), slight cognitive impairment, occasional tremors at bedtime, chills, numbness and tingling, emotional instability (easily over-stimulated), hyperreflexia (severe forehead sweats while sleeping) and feeling detached.

Symptoms that began, or worsened AFTER replacement hormones were started include  tachycardia and occasional arrhythmia, palpitations, blurred vision, (he has extreme myopia), chest pain, anxiety, occasional panic attack-like event, sleep problems (excess cortisol?), aching muscles, and finally, severe orthostatic intolerance.

How much of my son's condition is due to hormone loss or imbalance is puzzling to his doctors. They want to believe he will get better with hormone replacement, but I know that it will take more than that. He had a 2 cm craniopharyngioma removed that was flattening his pituitary gland. Although classified as a benign pituitary tumor/cyst, I recently found out that a craniopharyngioma is actually a central nervous system tumor/cyst. His brain MRI's show no other neoplasms or conditions, but no doctor has yet seen fit to examine the rest of his body. They don't believe he could possibly have two rare diseases at the same time!

Thank you Kujiforo for printing that list.

[evo123]

I am glad to hear you are going to try and have a TTT done, this may give you some answers.  

It is, as auntissie says, very overwhelming having ALL these symptoms but it is a BIG relief when you find out what is causing them, it is like you have validation.  

Please let us know how you get on x

[auntissie]

Even though it may seem completely and utterly OVERWHELMING.  It is a relief to find out what it is.  Because it's so complex, it is hard to deal with.  You can only treat the symptoms.  And the symptoms are unpredictable.  They can change with the hours.  But you get relief in your mind knowing what you have and that other people have it and are DEALING.  "IF" this is what you have, you will learn ways to cope.  You may be one of the ones that it will go away.  Or, you may find the perfect combination of things either through "natural supplements" or "prescription" that will relieve you.  No one is treated the same and not everyone responds to the same treatment.  So there is allot of trial and error.  But at least you know the road you're on and ways that others have traveled it and you have some examples of what to try.  Good Luck, Hon--you too can survive this!!!!

[Kujiforo]

Thanks for the links and information. I decided to go through a POTS symptom checklist and make notes of everything I experience on a usual day to day basis as others were doing on a forum system I came across. Its quite frightening. I am to attempt to schedule a TTT soon with my doctors.
---

Tachycardia (Grubb, 2000) YES
Lightheadedness (Grubb, 2000) YES
Dizziness (Grubb, 2000) YES
Palpitations (Grubb, 2000) YES
Exercise intolerance (Grubb, 2000)YES
Blurred Vision (Grubb, 2000)YES
Chest discomfort and/or pain (Grubb, 2000) YES
Clamminess (Grubb, 2000) YES

Fainting or near fainting (Grubb, 2000)YES
Anxiety (Grubb, 2000) SOMETIMES
Flushing (Grubb, 2000) YES
Fatigue (Grubb, 2000) (which can be disabling) YES
Headache/migraine (Grubb, 2000) YES
Shortness of breath (Grubb, 2000) YES
Postprandial hypotension (Grubb, 2000) (low blood pressure after meals) YES
Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color) SOMETIMES
Intolerance to heat (Grubb & Karas, 1999) SOMETIMES
Feeling cold all over (Grubb & Karas, 1999) YES
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS) YES
Bloating after meals (Grubb et al., 1997) YES
Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall) YES
Delayed gastric emptying (Grubb et al., 1997) YES
Polyuria (Jacob & Biaggioni, 1999) (excessive urination)NO
Diarrhea (Jacob & Biaggioni, 1999) (sometimes with alternating constipation) YES
Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999) NOT SURE
Tremulousness (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995) YES
Tunnel vision (Low et al.) SOMETIMES
Sleep disorders (Low et al.) (can cause unrefreshing sleep and an increased need for sleep) YES
Cold hands (Low et al.) (and often feet & nose) YES
Loss of sweating (Low et al.) NO
Hypovolemia (Low et al.) (low blood volume) YES
Chills (Low et al.) YES
High blood pressure (Low et al.)NO
Hyperventilation (Low et al.) YES
Numbness or tingling sensations (Low et al.) YES
Generalized weakness (Low et al.) YES
Reduced pulse pressure upon standing (Low et al.) SOMETIMES
Low back pain (Mathias, 2000 YES
Aching neck and shoulders (Mathias, 2000) YES
Excessive sweating (Robertson, 2000)YES
Nausea (Robertson, 2000) SOMETIMES
Noise sensitivity (Stewart, 2001) YES
Light Sensitivity (Stewart, 2001) YES
Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999) YES

Arrhythmias (irregular heart beats) YES
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses) YES
Easily over-stimulated YES
Feeling full quickly YES
Feeling "wired" YES
Food allergies/sensitivities (some foods seem to make symptoms worse) YES
Hyperreflexia YES
Irregular menstrual cycles YES
Loss of appetite YES
Loss of sex drive SOMETIMES
Muscle aches and/or joint pains YES
Swollen nodules/lymph nodes NO
Polydipsia (excessive thirst) NO
Pupil abnormalities SOMETIMES
Weight loss or gain YES
Feeling detached from surroundings YES
Restless leg syndrome YES

---

Its very frightening that something can cause all of these symptoms to happen. Even more frightening that I may have it life long, or so I read somewhere that if this is what it is, it may never go away, or get worse with time. But I also read that it can correct itself on its own, so that's what I am holding onto, that and God.

[LivingInHope]

Looks like it did edit that doctor's name!  I told medhelp more than once recently about a bad word that was seeing on posts (one of the times it was mispelled)- I hope the bot starts catching that four letter word consistently!

I was PMing evo about how I looked up the rules again and found out it looked okay to post links from medhelp.  Here's what I found:
"In consideration of being allowed to use the Public Areas, you agree that the following actions shall constitute a material breach of these Terms and Conditions of Use:"


"9.Posting links to other websites or individuals, without prior written permission from MedHelp."

So, I was telling her that's good to know that I can give a link from within medhelp's website.  

I got a friendly reminder some time ago by a moderator on another forum about not posting outside links when I posted a radiology website link with some very interesting info.   With my memory, I didn't recall whether the rules said all links or not, so I was being overly cautious!

[Heiferly]

You're always welcome to link to other pages on MedHelp whenever you feel it's relevant; no need to ask permission.  The only things you aren't supposed to put in posts are vulgarity, personal information (last names, email addresses, phone numbers, etc.), and links to certain types of external websites.  On the other hand, those things are generally auto-filtered ... that's where you end up seeing *******@******** in posts if we try to post the email address to contact Cleveland Clinic's dysauto clinic in a forum thread for example, LOL.  It's a "bot" that does the filtering so it doesn't know that it's OK to "violate" Cleveland Clinic's "privacy" but not OK to share MY personal email address.  :-p  I hope that all makes sense.  Also, if you happen to go to a dermatologist named Dr. **** Van Dyke, yes, I think his name will be blocked out as profanity--I guess I'm about to find out.  ;-)

[evo123]

Hiya, sorry to hear you are going through so much and are not recieving the support you need.  We can all relate on how it feels to be told there is nothing wrong when we are obviously experiencing so many symptoms.

You mention you have had extensive testing of the heart and several other tests done, but have you had an adrenal hormone panel done?  Testing your adrenal hormones and their function.  Adrenal issues, as SurgiMenopause indicated, can cause similiar symptoms as POTS.  

I was also told by my doctors that coeliac disease can cause autonomic dysfunction in some rare cases.  You are having an endoscopy soon which will look for this condition, as well as others.  I was found to have coeliac disease when I 'crashed' and this was at the beginning blamed for all my problems until further testing showed otherwise.  It is worth looking for.

This said, I would agree with the members above and advise you ask for a Tilt Table Test, this will rule in or out several conditions.  It may give you the answers you are looking for.

[LivingInHope]

I wasn't sure if I could put the link out here without medhelp's permission, so I PM'd her with it- but as long as they leave it here- guess it's alright with them & might be a help to others who run across this thread!

[evo123]

Hi, is this the post your are looking for:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Social-Security--Medicare--Medicaid--etc/show/1091637

x

[LivingInHope]

In POTS, they believe the blood pools in the lower extremities- so pumping the calf muscles might somehow act kind of like the heart muscle in that it might help to get the blood moving more or something.  I had one cardiologist tell me to pump my fists- I didn't really see how that was supposed to help.  

Anyway, you mention inability to exercise without fainting- it's not very often someone faints with POTS... though possible.  NCS on the other hand, another form of dysautonomia that can be diagnosed through tilt table testing I believe, is neurocardiogenic syncope- the people who suffer from this faint (syncope actually means fainting).

I will say that I've gotten very high strung at times when I felt it was because my heart was racing so fast.  It might help if you have your family read some scientific info on POTS and NCS.  Maybe even have them look at some posts here on medhelp of other sufferers!  

Also, if you haven't got one already, you may want to invest in buying a shower chair.  Then you sit on it for a long time after your shower until hopefully your heart won't go crazy when you stand up.  It's usually bigger meals that sets off the tachy with getting up and just walking afterward.  There was awhile when I wouldn't get up for about two hours after eating, because of the heartbeat and it could give me a worse headache from standing!

You sure you don't have low iron or ferritin (iron stores)?  I know some people think they aren't anemic just because their CBC is normal- but I've had worse tachy just with low iron and a normal CBC!

One of the moderators on here did an extensive post on how to apply for disability.  Let me try to find it for you!

[Kujiforo]

Thank you so much for the support, and even more, for the understanding. Nobody understands what I am going through in my family and they make it very tough on me wanting to do things (carry in groceries that are heavy, do this and that, go out places) that I know cause my symptoms to be worse, and acting very unsympathetic when I have my "Hypochondria/panick attack spells". Its so terrible!

Another thing is that I have not been able to work in a year's time. Is there a proper way to go about getting disability or any help like such even if I am undiagnosed? I simply cannot work with such symptoms. I can't even clean my own house much of the time, and today, haven't even gotten up to get a shower (its how bad I feel). Some days prove better than others. But I was told by my family that until they diagnose me, I have no chance of disability, so they 'won't bother' helping with that. They press me to get a job outside and though I want one, I know my body...and I know I am incapable of pulling set hours. Because I am severely symptomatic and it strikes without warning at times. I had to quit my last job suddenly last year because of this, because I'd have to take breaks...and that was before the worst of the symptoms hit. There is really no way for me to have a set hour job unless the boss/owner was very aware of my sickness and have extreme patience with me.

Does anyone here know about how to get help in this way? I don't want to be labeled disabled forever, of course, but I do deserve some financial help with doctor bills especially, until my condition is cured/under control. And right now, its not. At all.

[CHRISTYDRAKE]

Before my son was diagnosed, several doctors wanted to pass it off as anxiety or that he just didn't want to go school.  Even after a psychologist said it wasn't anxiety, they wanted to blame it on a mental issue.  The psychologist said when doctors can't figure it out, it must be a mental problem.  We just kept going til we found the right answers.  Don't give up hope, you'll find the right doctor.  

About the hot showers, they told my son to avoid them.  The opposite is true for my son, he is always hot.  During winter he walks around in just shorts.  Also, my son was diagnosed by a neurologist, so some neurologists do the tilt table and treat it as well.

Maybe have your relatives read information you found on the internet so they get a better understanding.

[auntissie]

Yes, Yeah, YUP!!!!! to all of those.  Sounds like POTS to me.

[Kujiforo]

Oh wow. I never looked into anything about POTS, but I certainly fit in over half of those symptoms that website listed. I always have a horrible increase of heart rate going from sitting to standing or from standing to lying down or vice versa, but sometimes my heart rate will increase at random, even if no change in position is made. A change in position just ensures an attack, but is not limited to. I take my time changing position most of the time now, to not aggravate it.

Doctors are really not concerned about me, it seems. My blood pressure bottoms out many times when I stand, especially. It seems to be the first thing that happens, blood pressure bottoms, then my heart rate increases. It causes my ears to ring and pop.

I've never had any other tests done, though I have requested tests. When you talk about compression, my cardiologist (the last one I went to) told me to put pressure on the back of my left leg when I feel faint. That actually helps tons, though I'm not sure why. Also, getting cool (like having a cold rag on my face or air) helps. Though my body, to me, feels cold all of the time, and I crave warmth, getting warm makes the situation worse with this illness. Its really strange. I feel especially bad sometimes after showers. I can never tell how hot my showers are because I feel so cold all of the time, but when I get out, I notice I have it on so hot my skin is red (and I am a very pale skinned person, so its easy to spot). And minutes after I usually have a bad spell. So I try to make my shower as cold as I can stand it now.

Its basically through trial and error that I control more of these triggers to spells, because I didn't know what the illness was, so I just had to do it on my own. Doesn't ever matter what I eat though...eating is the worst of my triggers, because it isn't choosy. No matter what portion or what type of food I eat, I always get sick afterward.

Does any of that sound familiar also to something related to this POTS or similar?

[LivingInHope]

It sounds like you are a sister in Christ!   He gives us the strength to face one day at a time!   From what it looks like here, it doesn't matter whether you are standing or not for your heart rate to increase.  Did they suggest the diagnosis of "inappropriate sinus tachycardia"?  This is what I was diagnosed with prior to having a tilt table test conducted by an electrophysiologist, who said I had postural orthostatic tachycardia syndrome (POTS) and that my heart was racing when standing so I would not pass out.  My heart usually wasn't racing over 100 (tachy) when resting.  

Do you ever have spikes in your blood pressure while resting when you are having this tachcardia?  If so, have you ever had a fasting plasma free metanephrines blood test to rule out pheochromocytoma, a rare tumor that emits catecholamines that can affect your heart rate and blood pressure adversely?  It can also cause sweatiness and headache.

I was given an explanation about the BP medicine I was taking that it would hopefully slow my heart rate down so that my heart rate so that my heart could work more effectively and that it might actually raise my blood pressure!  I'm not on BP medicine anymore and recently I tried some that I had been on before, but it didn't work out.  Compression stockings have been suggested to me, but my situation is not as bad as yours (holtor last year topped out at 152) and it is very difficult to put those on, etc.... so I don't do that either.  I do eat salt when I feel a certain way, like I need it and my urine looks really dilute.

  I have spikes in my blood pressure when I stand at times.  So, while I didn't test positive for a pheochromocytoma (rare tumor usually on an adrenal gland), various catecholamine type tests have come back high here and there, which I think (not confirmed) means I have the "hyperadrenergic" form of POTS.  

See PM for some info!

[auntissie]

It does sound like POTS to me.  These are the things that the majority of us are dealing with.  Some more severe than others.  I agree with Christy, the TTT is the first test you should do.  After 30 years of searching for answers, this one test explained it all for me.  Some people will get over POTS, others have it for life.  I think I've had it since I was about 12 years old and it started with an unexplained illness for which I was hospitalized for and couldn't go to school for 3 months.  Every since then, I haven't been the same.  As I've gotten older my symptoms have worsened.  When you feel so bad, it is hard to help yourself.  I agree with Christy  it would be nice to have someone who can help you search for answers.  Thankfully, my husband helps me.  If the Elavil was the blame for your problems maybe it should be reported.  That way you can see if anyone else has complained of the same issues.  It may need to be one of the warnings on the drug.  You need an electrocardiologist.  That's a heart doctor who specializes in the electrical system.  They are the ones that do the tilt table test and have the expertise in this.  Keep in mind that it is considered a rare condition and some  of the best cardiologist don't have a clue about it.  See if upping your salt helps.  Also, most of us have found compression stockings to be very helpful.  I also wear a neoprene wrap around my waist.  It helps the blood pooling in the ab.  It helps with the nausea and dizziness.  Hope some of this helps you.  Maybe your body will reset itself and you will be okay soon.

[Kujiforo]

They haven't suggested such a test. They're not very supportive in finding out the problem. I have been to three different hospitals in my area, and because no insurance, I'm almost always shot down or put on a long wait list. I just have to keep pressing them to do something about it for them to even consider. It frustrates me.

My family always has to take me to appointments, I can't drive myself with this condition, due to my near fainting spells. One of the doctors advised against me being behind the wheel until the problem is corrected, because I could very well have a fainting episode and put others in danger. That bit is also frustrating. The lot of my family thinks I'm just crazy, or calls me a hypochondriac. But being a hypochondriac couldn't be producing such severe symptoms right? At this point I'm willing to take on any diagnosis, as long as someone will put me on treatment or medication or towards a solution to this problem. I don't personally feel it is anxiety, stress, or hypochondria though, to be honest. I don't feel anxious when it happens nor am I obsessed with it. Just tired of having to deal with this.

Thanks for the website suggestions. I hope I can soon get a clear diagnosis and a cure!

[CHRISTYDRAKE]

Has any of the doctors suggested having a tilt table test?  This is the first test I would ask to have done.  I am sorry you are having to deal with this at such a young age, as I know how tough it is, my son is only 15 and going through this.  

Do you have anyone close to you that can advocate on your behalf or be at doctors appts with you for support?  The internet has been my best tool in dealing with this, finding doctors, chatting with other people who have it or their kids have it.  Recommendations and advise from other people.  Look on dinet.org or ndrf.org for doctors nearest you.,  etc...