Panic Disorder/Attacks...but could there be SOMETHING ELSE???

Hey all. Perhaps I should introduce myself first:

My name is Crystal, and since October 31st around 3 am, I have been in a constant struggle with problems ranging from clenching chest pains, heart palps, increased heartrate, head jitters/electrical vibrations/sensations through head and spine (like a painful electrical current that radiates up and down my spine), I have had my limbs go tingly, and even one time my right leg went numb and it kind of cocked up a little and went limp, so I was unable to move it...

I went to the ER numerous times, where they did a CT with contrast of the chest, thyroid tests, electrolyte blood test, etc.

I have also gone to Psychiatrists, Neurologists, Cardiologists, etc. The only real physical thing they could come up with was my Mitral Valve Prolapse, but said it was too minor to be causing any problems.

The doctors issued a 20-min. EEG, another echo (I had one 2 years ago), EKGs and haltar monitors, ya name it. I have had bloodwork for my B-12 levels, thyroid tests I can't even count anymore, Lyme Titer, ANA Titer, etc...

They concluded possibly anxiety and panic attacks, but these problems are too PHYSICALLY severe to possibly be. Many doctors are still scratching their heads at me and don't know WHAT's GOING ON!!

[DragonTU84]

I am just at wit's end, and am in DIRE need of help/reassurance/assistance!! It started when I started on Zoloft to take for my anxiety/panic attacks, that were mostly chest-related at the time....

I at first thought I was going INSANE when I had my first vibrating/electrical sensation. I thought for sure I was going insane, and I didn't know WHAT to expect. I thought for sure it would lead to a seizure, I would black-out, or something!!

I was initially told that I was suffering from Panic Disorder/Panic Attacks. since I at first was getting the typical attacks of the heart palpitations, clenching chest wall pain, lightheadedness, and freaking out that I was going to die or have a heart attack.

So my doctor decided to try putting me on Zoloft, in the SSRI class of anti-depressants since she thought for sure it would do me wonders and eventually get rid of and eliminate my symptoms. My GP promptly wrote me a script for Zoloft at 25 MG, and told me, "take this, you will be fine and it will do you wonders!"

So I left, of course stupididly believing every word she said. I went and filled the prescription, and the next day popped my first pill...

About a few hours into taking it, I had the WORST feeling in my life (well, it only got WORSE from there). I felt severely woozy and lightheaded, and had to sit down to balance and keep myself together. It felt like the entire room was spinning, and my head just felt BLAH all together, like I was getting a head illness or something. I was in a store that day, since I assumed everything with the med. would be fine, and was getting ready to check out when it just HIT me like a ton of bricks. Now, I have had lightheaded spells TONS of times in the past as well as Panic Attacks and Chest Pains, and it was NOTHING like those I had experienced before!!  

After that ONE day of taking the pill, I deviated away from taking it again! My symptoms improved, and I no longer had any more of those light headed spells after that one day..

However, as I was STILL suffering from the severe heart palps, chest pains and anxiety/panic attacks, my mother convinced me to give the med. another try, since my "sis was on an SSRI for her GAD and it was working her WONDERS." Still skeptical about taking the med., but DESPERATE to get rid of my other symptoms, I again popped the med...

Now, the first day I was fine, and this was on a Friday. I was back in the apartment with my fiancee, and it was late one Saturday night, and I was just lying in bed waiting for my man to finish getting ready for bed so I could follow up as well. I then all of a sudden felt this ELECTRICAL SURGE seem to VIBRATE throughout my head/brain, along with a ten-fold pins-and-needles feeling that surged through my head. I then felt the electrical surge feeling continue to surge through me, even going up and down my spinal cord. I PANICKED, of course, not knowing WHAT was happening to me. I started seeing blotches, and I PANICKED that I was going to pass out, have a seizure or SOMETHING!! I ran around the apartment, the feeling still going on through my head. I then tried sitting on the bed to calm myself down and regain myself, and it seemed like it started to pass. Then, I felt ANOTHER attack, worse than the first, which truly caused me to have blotchy vision and just go into utter chaos.  

My fiancee drove me to the hospital in case by the time we got there my symptoms worsened or progressed. Eventually, the off-and-on symptoms DID pass, after about 45 min. to an hour of pure hell and off-and on VIBRATION FEELINGS and ELECTRICAL FEELINGS surging through my brain.

We just went back to the apartment, and I went to bed that night.

The next morning, I woke up, and probably a mix between me having the attack that night and due to the fact I didn't get much sleep, I felt completely SLOW and BLAH the entire day. I could barely bring myself to speak, I dragged myself slowly across the room, and I just overall felt like a complete pile of ****!!  

I called the doctor-on-call (since it was a weekend) and told him about my horrific experience. You know what he did?? He "Poo-Pooed" me away and told me "Oh, it's not the medicine, just you. It was probably just a bad Panic Attack." I was SO mad....he also told me to "continue on the med."

I continued taking the med., and that following week, on a Wednesday, I had ANOTHER milder, but more PROLONGED attack that lasted off-and-on for about 2 HOURS!!   It kept me up until like 1:30 a.m., so needless to say I slept in late the next day...

The problems FINALLY seemed to dissipate, for about 2 weeks. However, after those 2 weeks were up (and I was still on the med.), I AGAIN began getting the weird head attacks!! Most were not as severe as the first, but they were still attacks nonetheless. Now, I have had Panic Attacks, and know what those were like, and sure these caused me to have Panic Attacks also, but moreso since I didn't know WHAT THE HELL was going on!!!

I was then getting head-related zings/buzzings/electrical sensation attacks EVERY DAY, sometimes mild and bearable and other times not.

I eventually STOPPED the med. after having it in my system for a month, but my stupid GP (she is a good doctor, but NOT for things like this) told me to QUIT IT COLD TURKEY!!!! O_O She said I should not experience too much side effects, if any.

Well, needless to say it made my head attacks TEN FOLD!! Sometimes they were mild and bearable, like before. And there were days I went without attacks. But when the bad ones struck, they left me PARALYZED in certain limbs, my head felt like it was going to go into CONVULSIONS or something, and it was just like PURE HELL!! I was completely conscious during these attacks, so you can imagine the FEAR I was under during this time.

I had an attack that was SO BAD once: I was just sitting on my computer, and then I all of a sudden felt this WEIRD sensation in my brain, particularly on my RIGHT side, and it felt like my brain/head was going to go HAYWIRE!! It physically felt like I was about to have a stroke, seizure or SOMETHING, even though I never did!! Well, of course I PANICKED, and I called the ambulance in fear it was in fact a TIA, stroke, or seizure about to happen!! I walked downstairs from my apartment, and as I stood on the stairwell by the doors to my apartment complex, I could feel my WHOLE RIGHT LEG BUCKLE UP, GO NUMB, and I COULD NOT EVEN MOVE IT!!! I was PETRIFIED!! What the HELL was going on with me?!?!  The ambulance came, and before they came I could feel the feeling return in my right leg, it went "erect" again and I was able to regain control of it. I had to BALANCE myself by holding onto the railing of the stairs while it happened. Yet I remember every speck and detail of it perfectly...      

After about a month 1/2 or so, and after starting on a mult-vitamin since I thought maybe I had some vitamin deficiencies that were attributing to my problems, my problems not only began to dissipate, but the head zings almost vanished COMPLETELY!! I still get the dizziness/lightheadedness and my head will feel quooky/odd still at times during some of my Panic Attacks, yet NOTHING like I had to endure before!! And sure, I still get heart palps and anxiety, but NOTHING like the torment and torture I had to go through getting ON and then OFF the Zoloft!!!  

I am now seeing a Psychiatrist, who prescribed me with Lorazepam and also prescribed me with Lexapro, even though I TOLD him about my reaction to Zoloft. He was STILL convinced, however, that it was just Zoloft and that another SSRI should do the trick. Well guess what happened???

I took it on a Saturday, and for most of the day I was fine (aside from feeling a little tired). I thought maybe I was HOME-FREE and found a med. that would work GREAT!! I took it at NOON along with the Lorazepam, which I take 2-3 times daily. After 6 HOURS of the med. being in my system (Lexapro), I got ANOTHER head-related attack of the electrical vibrations, ten-fold pins and needles feeling, and getting sweaty and clammy, then cold. I immediately called my doctor, and STOPPED taking the med from there on out.

I am still taking Lorazepam, for the panic attacks, but I still get the head zings and vibrations, lightheadedness/dizziness, sweatiness/clamminess, I get cold hands and feat easily, tingling in the head during the day, as well anxiety and Panic Attacks. I started at .5 mg 3X daily, and am now up to 1.5 mg going up to 2 mg 3X daily. I have still not seen any improvement since being on the .5 MG....and am AT A LOSS!!! :( :(

I mean, my doctors assumed it was part of my Panic Attacks, but how could it make my LIMBS GO NUMB like that and UNABLE TO MOVE, let alone those painful electrical surge feelings I used to always get.

I want to know if there is SOMETHING ELSE GOING ON!! That could possibly be CAUSING ALL THIS!! THe Panic Attacks...severe chest pains...head and spine electrical surges/feelings of going into convulsions, sweatiness and clamminess, ya name it!! My Pysch. is STILL AT A LOSS, and doesn't know what to do with me anymore... :( PLEASE HELP!!! ANY ADVICE WOULD BE APPRECIATED!!!

I don't even KNOW all the bloodwork I had been tested for, but those I CAN remember are for B12, Lyme Titer, ANA Titer, Complete Thyroid checkup, electrolytes, etc....

PLEASE, OH PLEASE HELP!!!! I am sick of all of this...and just want these attacks to go away!! For the love of GOD, if somebody out there can tell me exactly what this is...PLEASE!!!

[Ouroboric]

I have some information that might be useful to you, but I'd rather discuss it through e-mail than on the message board.  Please send an e-mail to ***@****.

Hope to talk to you soon,

-- Nicole

[economist]

Hi Crystal

First of all let me say that I don't know what is wrong with you and it maybe that somebody else has some good answers. However if all else fails my view if your are not getting anywhere with orthodox investigations you may need to look at the less orthodox, and by that I don't mean loony. There are quite a number of doctors, although they are in the minority, who believe that the panic attack type symptoms you experience and others can be caused by relatively minor imbalances in the endocrine system which are not picked up by standard tests. I don't know whether they are right but in your situation it might well be worth investigating and it is not too expensive.

If you want to follow this up your best starting point would be to google "Stop the Thyroid Madness" which is website dedicated to this line of enquiry and I would suggest asking a question in the adrenal section. The key test which might be advocated in your case is the adrenal stress index which is a 24 hour saliva test of your adrenal hormones. This stuff is controversial but I personally know people who have got better and there is stacks of literature on it (written by doctors).

I hesitated to make this post since it is controversial  and I didn't want to send you on a wild goose chase. However, you sounded so desperate  for a way forward that I figured it was worth posting, which lets you make the decision as to whether it is worth pursuing.

I have more info and book references if you wnt and am happy to share my
experiences. However, whatever you decide to do, good luck and I hope you sort it out.

Finally, please excuse the pompous nickname. I stuck it in since nothing else worked and I am still trying to change it.

[DragonTU84]

I thank you both for your responses.

Perhaps I did not make some things clear enough as to all the testing I have had done already.

So far, here are the tests that I can recall (bloodwork I cannot even half remember, yet those I DO list I have had tested and came back fine):

Blood:

Lyme Titer

ANA Titer

Pregnancy Tests

B-12 Levels Checked

Complete Thyroid Checkup

Bloodcount

Electrolytes

AMONG OTHERS I CANNOT REMEMBER/RECALL DUE TO ALL THE BLOODWORK FROM HOSPITALS AND DOCTORS

Other tests:

-EKGS I can't count anymore

-Stress EKG test

-Haltar EKG

-20 min. EEG test for seizures

-MRI without contrast of the brain-only asymmetry

-CT SCAN of brain w/out contrast -showed possible calcium deposits and of course normal asymmetry

-CT SCAN WITH Contrast of chest - fine

-DID have a 24 hour haltar EEG, but the DAMN TAPE was broken so they ASKED me to redue it- I told them HECK NO!!!

-Echocardiogram along with EKG: I DO have Mitral Valve Prolapse, which is minor and without regurgitation. It is hereditary, and my biological mother has it along with one of my half-brothers. She also gets SOME anxiety and panic problems, yet NOWHERE near as severe as I do. Hers is just occassional (once a month or so TOPS). I also have a slight heart murmor which I don't even notice.

So there ya have it. ALL of the testing I can remember to date. For a more complete blood workup, I don't have the paperwork on me to tell you more about what else I had tested....those are just the ones I CAN recall...

[economist]

Thanks for the additional info. I am no expert but I think these are all orthodox tests. The point I am making  is that there are a significant number of doctors who question the thoroughness of some endocrine tests, particularly for the thyroid and adrenal glands and believe that new style 24 hour saliva tests and urine tests are more accurate. They also believe that a whole range of apparently unexplainable symptoms can be caused by endocrine imbalances which are not dislosed by orthodox tests.I don't know if they are right but there are a great number of patients with previously unexplained symptoms who agree with them.

This might not be the answer for you but it might be worth thinking about if all else fails.

[DragonTU84]

Please listen to me, economist. I am not going to try discrediting your claims, yet I REALLY don't think my problem is Hypo-Thyroid related. I don't have the typical constant fatigue, constant illnesses that many sufferers if this disorder seem to suffer from. I think there is something else going on, whether it be neurological or whatever in nature.

I have had UPTEEN TESTS for Thyroid that I am SICK of getting tested for it, and ALL have came back fine. I have had T3, T4, AND TSH along with probably others checked. I had my T3 AND T4 levels checked COUNTLESS TIMES: EVERY time I went to a cardiologist, neurologist, went to the ER, that was ALWAYS one of the tests they performed. So I HIGHLY doubt it would have missed something as important as that. Let alone the fact my symptoms don't match up at all. Any fatigue I do feel is AFTER I get an attack, from lack of sleep or due to the med. I am on (since it makes me lazy). During the day I am otherwise HEALTHY AND FINE!!! It is just these ATTACKS, WHATEVER they are, that ALWAYS seem to hold me back, and due to the fact that SSRI's just didn't work for me and made my head-attacks BEGIN along with the fact that the benzo's seem to do diddly-squat makes me think there is SOMETHING ELSE GOING ON!!!!

Dunno what, so PLEASE ANY ADVICE WOULD BE GREATLY APPRECIATED!! I AM SICK OF ALL THE TESTING, and JUST NO REAL ANSWERS!!!

[DragonTU84]

Thank you, economist, for providing me with the information you have regarding the possibility that I may have a problem with my adrenal levels. However, this in all honesty would come as NO SURPRISE, as anxiety and panic attacks and anxiety levels throughout the day are regulated by the adrenal glands located in the center of the brain. When these two glands overreact/are not releasing their hormones and chemical adequately, it thus causes such panic and anxiety symptoms. It is very possible I could be suffering from adrenal fatigue, especially with all of the stress I was under BEFORE all these symptoms started.

So, perhaps curing and regulating the adrenal glands would help to regulate and eventually cure my panic attacks and anxiety. However, I STILL have some questions for you and OTHERS that need to be answered:

If this IS the case, then WHY did I have the adverse reaction I did to the SSRI's, and why isn't the benzo helping for my Anxiety and Panic attacks?? Yes, the adrenals COULD be the cause and problem of all of this, yet then WHY does my body show NO IMPROVEMENT or reaction even with the INCREASED DOSAGE of the benzo?? And WHY the electrical sensations/vibrations from the SSRI?? And why do I STILL get similar attacks TODAY???

And I did hear back from Nicole. It may have been YOU Nicole who responded to my post in the Undiagnosed Forum. I am sorry, but I do not believe the whole kundalini story. I cannot believe that God or any higher being would inflict such punishment as anxiety and panic attacks and other symptoms in order to "transform" or make a person "reach enlightenment." I myself have done some Yoga and meditation, and I believe that one CAN feel enlightened by the LORD, but NOT through such torturous symptoms as I and others have suffered. I can NOT believe you are misleading many misdiagnosed individuals into this...how sad and pitiful...I have reached enlightenment and had connections with the Lord many times, and it was at those times that I did NOT experience any pain, but felt a complete sense of CALM and REASSURANCE. It was also in those times too that God sometimes actually SHOWED ME (not literally, but intuitively) what it is I was suffering through at the time. Yet please understand. I don't blame you or chastize you, and it is unfortunate many problems have gone undiagnosed. Yet there is a cause for EVERYTHING, and it sure as heck isn't that kundalani.

I KNOW that part of what I have is Panic Attacks and Anxiety. I also have the tendency towards a minor case of hypoglycemia I believe, where if I don't eat anything for awhile then I will get lightheaded, hands will grow cold and numb, I will feel dizzy/faint, and usually eating something ASAP resolves the issue. I have had that problem since I was a teenager.

I also of course have Mitral Valve Prolapse, coupled with my Panic Attacks and Anxiety. I don't deal with stress well AT ALL. I tend to ball out and cry, often running aside and just sulking to myself or if in anger try to go by myself to work it out.

So it is very possible the adrenals could be causing all this. Yet I STILL don't understand ALL of my symptoms and the reactions to the meds. and why the meds. aren't helping at ALL for my anxiety and panic problems. If I at least had SOME relief, or MOSTLY relief with still some problems...well I just don't know what to think any more.

And getting on the SSRI's was a MESS. Yes, I am emotionally unstable at times, and can most of the time remain and be calm and happy, but the minute something upsets me I tend to stress out over it easily. But the SSRI's...it made me calmer for the most part, but there were days where I had bouts where I just got ANGRY for NO REASON or felt ANXIOUS for NO REASON AT ALL, and they weren't panic attacks or nothing of the sort. AND of course it caused the electrical sensations in the brain and spine, and the time where it felt like my leg went limp and numb and I could NOT move it!! I HATED the drug, and I of course stopped it COLD TURKEY, which caused me even WORSE PROBLEMS (psychologically and mentally).

Any other help/advice would be GREATLY appreciated!!

[nastursim]

SOrry, one thing I forgot to add is that the tingling and numb sensations that you are feeling may be due to your over breathing during your panic attacks, I use to hyperventilate when I was having panic attacks and that can cause light headedness and the strange feelings in the body.

[economist]

So sorry if my comments have antagonised you. I have been ill for seven years and  also got fed up with doctors saying they could find nothing wrong with me. I knew my initial posting would be controversial but made it because there was a possibility it might help.

It has been my experience that if doctors cannot find the cause of a problem with their usual tests then the patient themselves become the problem. The classic example  is ME which for years was regarded as a mental problem since all tests were negative. As I said at the beginning I don't know what is wrong with you but you since have posted a question on this site asking for alternative explanations to anxiety I assume that you are not convinced that your doctors are right. For what it is worth I also don't think you have hypothyroidism but based on my own  experience  there just might be an issue with your adrenals. I may also be wrong.

It is up to you what you want to do but all I will say is that it took me five years of illness before I looked outside the orthodox and I wish I had done it earlier.

[nastursim]

I am not a mediacal professional but it really does sound like an anxiiety based disorder. Anxiety can do the most amazing things to our bodies, and many  a times I myself have thought I would surely die from the symptoms I was suffering and have gone to the ER on numerous occasions also. I myself found zoloft to be the worst antidepressant in the world as it made my body speed up and hence all the crazy thoughts that go through ones head that they are going to die. A website that I have found help is, www.depressionet.com.au, there are so many people on there I am sure you will be able to relate to and who can sympathise with you and experience similar things. Take care of yourself, and if the medication doesn;t seem right for you, don;t take it, it is really trial and error with SSRI's, not all suit everyone.

[Ouroboric]

No, it was not me that responded to you in the Undiagnosed Forum.  Apparently someone else noticed the similarities between your symptoms and kundalini manifestations as well.

It does not bother me that you don't believe it; I don't feel compelled to convince you of anything.  

I didn't want to discuss this in the forum because I didn't want to get into an argument or discussion about whether it is true or whether it is complete hogwash.  It might be either.  Like I said, I am not out to prove a particular theory; I just wanted to help if I could.

For the record, I don't think that God or any other "higher being" is "inflicting" punishment and misery upon you.  I think this is a completely natural maturational process that can be explained scientifically.  Psychiatrists such as Lee Sannella and Stanislov Grof have examined this phenomenon within a clinical context.  

It is interesting that you meditate frequently.  That has been known to initiate the process.

Since you brought up the topic in the forum, here is a very brief description if anyone happens to be interested:

http://en.wikipedia.org/wiki/Kundalini_Syndrome

I didn't intend to mislead anyone.  Believe me, I almost didn't want to tell you this because I figured you would respond in this way.  But you seemed like you needed some answers and, if anything, I thought this may interest you.

I should add that if anyone is experiencing these symptoms, I think it is very important to be examined by a health professional.

I wish you well and hope that you are eventually able to solve your myraid health problems.

Take care,

-- Nicole

[economist]

I don't want to get into an argument about this as I have enough health problems of my own.

The reason I replied to your post in the first place is because your symptoms were very similar to what I experienced several years ago after a period of intense stress and being involved in a serious train crash. At the time it felt as if my entire nervous system was significantly overstimulated. It didn't feel like a mental thing: more like my flight and fight system was permanently switched on. I was initially treated for anxiety with SSRI and MOA antidepressants which made things worse and gave me severe shooting pains in my head. I also had electic shocks in the back of my head and down my spine, my heart raced randomly and I got strange  internal tremors in my body. Sleeping was severely disturbed. Neurologists an endocrinologists could find nothing. In my case diazapam helped a bit but didn't resolve it and my doctor would not let me take it long term.

Once you are in this situation the problem is how to take matters forward. I recently talked to a psychiatrist informally who thought I may have been suffering from post traumatic stress disorder and should have been referred to a psychologist. He may have been right and that might be something for you to think about.

The only other option I had was to go outside conventional medicine where, after trying various alternative therapies, I discovered that there were doctors who believed that stress directly affected the working of the adrenal glands and that there were  specialist laboratories which tested for this condition.(I live in the UK but in the US the main labs appear to be the Canary Club and Genova Diagnostics).This is quite a different view from the medical orthodoxy who do not appear to recognise adrenal exhastion as a condition and instead treat the symptoms as a  psychiatric disorder. The medication you have been prescribed therefore would appear to have been directed at the mind and not the adrenals.

As I have said before it is up to you how you take this forward. I am not medically qualified and can only tell you about my experience. If you don't agree that's fine. All I ever intended to do was to make you aware of this option if you wanted to explore it. The website I gave you previously specialises in this area and has a good forum and expert replies.

Whatever you decide I hope you feel better soon.

One final thing: the adrenal glands are located on top of the kidneys and not in the brain.

[DragonTU84]

I again thank you for your concern economist. However, I cannot recall you providing such a link/website with further information. If you could, do you think you could POST IT AGAIN on here or e-mail me the link to:

***@****

Nevertheless, I will be speaking with my other GP, who seems more knowledgeable in what is going on with me, and I will mention to her the possibility of something going on with my adrenal glands (adrenal fatigue) and ask to get properly tested for it.

I am at a loss, as is my Psych. (who WON'T even answer my phone calls anymore :( :( ), so I am willing to try anything at this point. Besides, what's the harm in trying...the worst that could happen is the tests come back negative, and all it was is that I just have an odd case of Panic and Anxiety...

However, I am STILL looking for other advice/input!! ANY OTHER HELP IS APPRECIATED!!

[Annie62]

Economist, you wrote above:  It has been my experience that if doctors cannot find the cause of a problem with their usual tests then the patient themselves become the problem. The classic example is ME which for years was regarded as a mental problem since all tests were negative.

That is absolutely and undeniably true.  Only those of us who have spent years being ill, seeking a diagnosis, know what this degrading and soul-destroying experience is like:  To be dismissed over and over again, physician after physician (about 15-20 by my own count in the past 13 years) because tests are unrevealing and doctors, like a bunch of automatons all in a row, cannot bring themselves to trust in their patients but find it easier to dismiss and discount them.  You're supposed to put all your trust in *them,* but they don't feel the need to reciprocate by giving the same respect and trust to their patient, but instead treat one as non-credible, which, quite frankly (especially after 13 years of relating one's long list of symptoms to the doctor without acknowledgement) is tantamount to calling the patient a liar.  

Then the patient is looked upon as THE problem, because she or he (usually it is a *she,* especially when the doctors are male)--there have even been studies done on how physicians dismiss women's complaints more readily than similar complaints, such as chest pain, made by men--continues to insist that they have something of significance wrong with them that is making them feel so sick, unlike what they used to feel like before they got sick, but those kinds of distinctions are lost on most doctors.  

And doctors don't like it when patients insist that they have something wrong with their bodies when the doctors *themselves* don't believe they do have something wrong with their bodies!  And they get mad and impatient, and huffy and puffy and irritated in their manner if the patient has the ---- to continue to insist that he/she really IS sick and needs help, and they act as though the patient is wasting their time.  They don't have time for patients who insist that they are ill when they, the doctors, don't believe that they are, in fact, ill, and they have other patients to tend to with more serious problems (like colds for instance).  

And you would think that once the patient actually *did* get a diagnosis, after all those years of struggling through a hell of her doctors' making, when she finally succeeded in getting another doctor to listen to her, the doctors that were so arrogantly mistaken would apologize for their utterly wrong assessment of the patient (as being a psychosomatic) and for the misery, anger and frustration that they caused----but no such luck.  Instead the patient tries to get in to see a new neuro practice and they inexplicably refuse to see her and won't give her a reason (there is no justifiable reason) and then the patient is dumped/terminated by her PCP who acts as if the patient was the one who was responsible for all this.

All I can say is it must be nice to be God and look down from above on those whose lives you have the power to ----- with.  I would love to know what oath these people take.  I thought it had something to do with helping sick people and not turning them away when they were ill.  

Economist, are you still regarded as a "mental problem" by dismissive physicans?  If you don't want to share, that's ok, but I would love to hear from someone who has even remotely experienced what I have (and continue) to go through.

[economist]

I regret that I am now fed up with this. You obviously think I am stupid so do what you like.

[economist]

Thanks for you message. Normally I would be very happy to share my experiences with you but after the terse exchanges with DragonTU 84 I prefer not to do it today or on this thread. I will, however, post a new thread on this subject next week. In the meantime if you have had serious problems with dismissive doctors I would recommend  a book by Diana Holmes called "Tears Behind Closed Doors". Not only did it take 23 years to reach a diagnosis but the medication almost finished her off. Don't get me wrong I am not completely anti doctor, and there are some good ones around, but in my experience there is an unfortunate arrogance  amongst many of them who simply won't listen properly to their patients. At least this is the situation in the UK, where I live.

Finally, my nickname is a mistake which I am trying to change through admin. My real name is Bill.

[DragonTU84]

Bill, I AM SO SORRY if I came across harshly in any way. I seriously did NOT mean to be...I am truly sorry, and as I have said, I appreciate all of your help....now I feel bad... :( :(

As I wrote, I was not discrediting what you were saying at all. I just don't know if my problem is adrenal or whatever or not...I DO want to get it checked out now, thanx to you. :) :) But PLEASE don't feel like I am dissing you or throwing you off.

I am unfortunately going through a LOT of the same things you are. I have been from ONE DOCTOR AND HOSPITAL TO ANOTHER, having them just "dismiss" me and look at me and almost LAUGH. :( Even when I went to a neuro, he said "oh, you have Panic Disorder, I can't help you, so why did you come and see me??" Making my time there feel like a WASTE.

The same for hospital visits. When I have a bad neurological-like attack, I feel like the best thing for me to do is go to the ER, since I am scared it will become a seizure or something. Luckily it NEVER has, yet ALL of the ER's have DISMISSED ME AS HAVING NOTHING BUT ANXIETY.

Please...oh please don't feel like I was acting negatively towards you... :( I wasn't. I FEEL your pain, believe me!!!!

Even my own Psych. now won't return my phone calls. He is treating me as some lunatic who just calls whenever I have an attack, when I am trying to REACH OUT TOWARDS HIM for help as to what I should do next.... it is like when I am IN THE OFFICE with him he treats me as a patient and individual and shows me generosity and respect...yet outside of the office it is like he doesn't want to give the time of day to a person who really needs help... :( :(

I am at a loss, and feel lost. At the same time I am SICK of all of the testing and them just FINDING NOTHING. :( :( I just wish somebody could say "this is EXACTLY WHAT YOU HAVE," instead of diddly-daddling with being tested for Lyme, Lupus, EKGS, EEGS, B12, Thyroid like NO TOMORROW...PLEASE JUST UNDERSTAND WHERE I'VE COME FROM. :( :(

As were you, I am just SICK of it all!! I just want to know if it is just ALL PANIC ATTACKS/DISORDER AND ANXIETY or if there is something ELSE GOING on, whether it be physical, psychological/mental, or WHATEVER. Yet I am sick of diddly-daddling with trying this test and that....and them just ALWAYS COMING BACK FINE!!!

I am sorry...I am not mad or hating you...PLEASE don't feel that way Bill.... :(

I AM SO SORRY!!! Please understand I am not dissing you or anything. Just frustrated, and if it sounded like I was mad AT YOU, I AM SO SORRY!!!

That is why I asked you to send me the link, because I seriously didn't see the link on here about it, and I would LOVE more info. you have to provide for me. I know that you are just trying to help, UNLIKE THOSE HEARTLESS DOCTORS, and are trying to reach out to a fellow sufferer....

PLEASE, I didn't mean anything mean at all....I hope to hear back from you again more about this...

If you really are pissed off at me, then I guess this is farewell...thanks again for all of your help, and again I am truly sorry!!

I was hoping to hear more from you. That is why I gave you my e-mail address:

***@****.

~Crystal

[Annie62]

Crystal,

You should not be so hard on yourself!!  Any reasonable person would accept your apology.  Sometimes things we say in writing, especially online to someone we don't know, don't sound the way we intend them to sound. (That's one of the problems of the internet).  We can't actually hear the tone of someone's voice, etc., to get a true feel for where they are coming from.  You clearly are very upset, and you shouldn't be.  That will only make your symptoms (regardless of the cause-whether anxiety, neurological or both) worse!  So, again, don't be so hard on yourself.  You are clearly frustrated and impatient for real answers as to what is going on with your body, and that is understandable when you have such distressing physical symptoms.  So, don't worry so much about what others think about you.  I am guilty of the same thing--and it is not a good way to treat oneself.  

[Annie62]

Hi Bill, you're welcome for the message.  I'm sorry I sounded so bitter (but unfortunately I am).  Oh, well; sometimes I go back later and read what I've written and I wonder what people must think; but they just don't know unless they've spent a good chunk of their life dealing with this unwarranted BS--it absolutely burns a hole in one's soul.

I'm sorry about your upsetting exchange with DragonTU; I understand why you were put off by her words and apparent tone, but it doesn't look at all as if she meant it the way you took it or it may have sounded in writing.  Sometimes what we say online (especially when we are frustrated and impatient for answers/help as she clearly is) doesn't sound the way we intended it to sound (hence, her clarification and apology below).  She clearly is anxious for answers as to what is causing her symptoms, so I think she is understandably just very frustrated.  I know what that feels like.  

If you want to start a new thread some time next week on your experiences with dismissive doctors and your illness, I look forward to reading it.  If you change your name from Economist to something else then somehow let it be known in the post title, as I don't read every posting as I used to, or address the post to Annie62.  I assumed you were a woman when you talked about being discounted by doctors, but I guess it does happen to men as well.  

If this book comes in paperback I will get it.  I'm curious what she was dxd with, and if I had to make a guess it would be one of the autoimmune diseases.  And I am not anti-doctor, either.  My brother is a doctor and is everything good to be found in one.

The arrogance and unwillingness to listen I believe is universal--not unique to the UK-and my guess it that it is probably especially so of western practitioners.  The neuro I saw a couple months ago at a major clinic (and who helped finally dx me) said that western medicine is inclined to try to put things in a box, and if it doesn't fit, or doctors can't make it fit (in other words, if tests don't show anything), then they don't acknowledge symptoms and dismiss them out of hand.  There is a lot to be said for that.

[DragonTU84]

I really feel bad now... :( :( You have no idea how sorry I really am....I just hope to continue receiving your helpful advice economist. You seem to be the only one on here who actually cares...cares enough to tell me your story and try and give me your advice...without just giving me some religious mumbojumbo which I have heard before.

I just don't know what to do anymore...I cried last night from all the frustration, that is how sick I am of all of this. I cry almost daily, and usually have to meditate just to keep myself sane....

Please don't feel like I am discrediting or defaming you or anything...I was not intending that at all..I was not trying to make you look like a fool or anything....yet I guess you won't respond to these neither....as you seem to now have grown a hatred towards me....

Again, I am so sorry. Please forgive me...

[nastursim]

I really don;t want to be sticking my nose in, but from experience it could well be "just" panic/ anxiety. There is such a thing as, I and know it sounds awful and it use to anger me, as "psychosoymatic" illnesses. It is when your body experiences real symptoms but there are no medical reasons for it. I would really encourage you, even just for your own sanity and to receive support, to llok up the website I suggested, www.depressionet.com.au, it is an excellent source of help support and info.

I do hear your pain and frustration, especially to not have real answers for so long. Maybe if you feel pushed aside and unheard by your psych, then it might be worth looking into finding someone who can give you some real help. There are steps you can do to help maintain your anxiety, and believe me it can actually decrease and not control your life. I really hope you find the help you need. Don;t give up on yourself and keep on keeping on.

[economist]

Hi Crystal

Thanks for the two messages. You appear to be in a bit of a state over this and  of course I will do what I can to help. But I am not a doctor or any sort of health practicioner so all I can do share my experience and what I did in the hope it might help.

I don't know if your adrenal glands are the problem and I don't want to point you in the wrong direction.However, if you want to investigate further  I would suggest posting a question on the "Stop the Thyroid Madness Website" on the adrenal forum. The moderator should give you a good answer. Unfortunately I don't have the link to hand but it is easy to google.Your GP is unlikely to be supportive of this approach since mediacal orthodoxy only recognises the two extremes of adrenal disorders: Cushings Syndcarome and Addison's disease which should have already been ruled out. As I pointed out this subject is controversial but, beyond making the initial enquiry, the next step would be to see a sympathetic doctor: you should also be able to get this info from the forum.

By way of background this approach to the effects of stess on the body stems from the General Adaptsion Syndrome put forward by Hans Selke in the early part of the 20th Century. He identified the three stages of prolonged stress: stage 1 is the normal stess reaction: stage 2 is the resistance stage when the adrenal glands are overworked and stage 3 is adrenal exhaustion.


If I might risk getting my head bitten off again can I make some further suggestions. First of all it is important to find somebody local who cares and will try to help you find a way forward. I found a good naturopath who listened and helped me sort out my diet and lifesyle to help the body recover. It wasn't a miracle cure but it helped and gave me some optimism. The second thing is to calm down which is not easy when your body appears to be in complete chaos. I read that you meditate regularly but I don't know which type. I found the basic buddist practices best for me and the repeated messages of calmness. I also found that when the symptoms occurred it was best to try and "roll" with them although this is difficult. Finally, I found acupuncture, carried out by a Chinese doctor, helped quite a lot.

In thinking about this sort of approach, I am not suggesting that you give up on conventional medicine, and it may be that you will still find a way forward.  

[Annie62]

Economist:  I will definitely await your posting next week and in the meantime I will read a few reviews on the book you mentioned.  

Crystal:  You clearly have significant problems with anxiety/panic, and it is good you are seeing someone for therapy and probably should pursue the psychopharmacologic aspect of that as well.  There are drugs to treat panic disorder/anxiety other than the ones you mentioned, different classes of drugs that might be tried, and hopefully you will find one that helps.  Just because you had a bad experience possibly from the Zoloft doesn't mean other drugs won't be helpful.

But it's also possible that you have something going on in addition to your panic/anxiety disorder, whether neurological or endocrinological or something else.  I don't know if that is the case or not, but you know your own body best, and if you believe that that is the case then you should continue to pursue a diagnosis and be insistent that something else is going on and not allow any of your doctors to put you off/bully you, make you feel ridiculous or as though you are wasting their time.  Of course this is a hard thing to do when you know you are not being taken seriously and being discounted, but you have to try to stay calm and articulate when you speak to your doctors.  If I were you I would write down all your symptoms in detail and be clear, concrete and precise about them, when they occur, etc., and take the list to your PCP or neurologist if you are seeing one, and hand it to them.  Sometimes that works better than going in to try to talk about your symptoms (that never got me anywhere due to my nervousness, the arrogance and impatience of the doctors, lack of time on their part, etc.  Also, It's hard to express yourself well  when you know you are not believed.  You are made to feel as though you are one who is "crying wolf."  

Sometimes tests don't always show the true picture as economist mentioned.  Also, sometimes the right tests just aren't being done in the first place (as was the case with me) and when they finally are done, the problem is revealed and you get a dx (and hopefully some kind of treatment if you are lucky).  I was dismissed for 13 years by my physicians and honestly and seriously contemplated suicide.  Because of my past (and present) problems with depression and anxiety, I was written off as a psychosomatic nut.  It never occured to these geniuses that I could have a real medical problem/neurological problem IN ADDITION to my OCD, etc. (besides, OCD does not cause ANY of the symptoms which I have).  Having a psychiatric/emotional problem does not preclude one from having other medical problems as some physicians seem to think.

Just be persistent, and I really advise writing down all your symptoms in a clear and concise way and taking the list to your PCP or neuro if you have one.  That way he/she will know exactly what you are experiencing and also cannot say you didn't inform him/her of what you are going through.  Good luck to you.

[economist]

Hi Annie

I think I may have been a little oversensitive in my last message but I have spent a lot of time on this forum this week so I will stick by my plan to post my experiences with doctors next week, but on this thread.

Diana Holmes book  "Tears Behind Closed Doors" is is already available in paperback from Amazon and there are some good customer reviews on Amazon.co.uk. Diana was eventually diagnosed as hypothyroid after 23 years but she had previously been diagnosed and treated for all sorts of diseases prior to them. The real message of the book is that medical tests are not perfect and that many doctors don't listen sufficiently to their patients. Diana's problem was that she had the clinical signs of hypothyroidism but her blood tests were normal, which is apparently not unusual.

I only joined this site recently and may well be getting the reputation of being completely anti doctor. This is not the case but like you I have had a lot of problems with the medical profession which I will post next week.I think the neuro you saw last week was spot on in his remarks and sounds like a good doctor.

Regards

Bill

[tommy08]

Hey I just joined cause I read your post and I feel for you. Why? Because I have been there and done that. I have been to the ER way too many times and I my heart was between 180 and 200. That has got to be the worst feeling on earth. Well, I was driving myself to the ER and I had to pull over to a gas station and there he was filling up his BMW Motorcycle....I was like this was meant to be. It was a California Highway Patrol Police Officer. I went up to him and said my heart is going fast he called it in and said possible cardiac arrest. That scared me more. So the fire truck showed up first and then the ambulance. They took me to the hospital. Tests were conducted once again. Well, sir it was nothing more then a panic attack on a major scale, we get that all the time. My 12 lead EKG in the ambulance showed that I has Sinus Tachycardia. Boy it had to be the most embarrising moment of my life. It felt like I was crying wolf, save me, save me and they are like well there is nothing to save you from....you check out A O.K. To which people with panic disorders have a hard time believing. I have had fast heart rates way to often so I take Atenonol 25mg once per day. And for the anxiety Xanax 0.25mg twice a day and it works like a charm. The more you focus on the symptoms and thoughts the more you get involved with yourselfpaying way to much attention to something that has nothing more then just fear pushing it's way through your mind and life. It sucks, I know. Read a book by Dr. Claire Weekes, it will change your life for the better trust me. She explains things in detail and is like a mom if you will. P.S. Remember what ever you focus on expands. Have a great weekend.  Tommy

[Ouroboric]

I am somewhat hurt that you thought I didn

[economist]

Annie 62, you wrote:

"Economist, are you still regarded as a "mental problem" by dismissive physicians? If you don't want to share, that's ok, but I would love to hear from someone who has even remotely experienced what I have (and continue) to go through"

In last seven years I have had a lot of  problems with dismissive physicians but I now  have an understanding GP who is frustrated herself because she doesn

[Annie62]

Well, let me say I am glad you finally have a GP at least who is listening to you (after the lovely ones you've had).  At least you have a base to start from.  If you have a GP who doesn't believe there is even a problem (other than a mind problem) then you are really at a disadvantage.  I know from experience.  

Regarding the train crash you were involved in, were you physically hurt in it and did your symptoms appear right after that or some time afterwards?  Do you think that something possibly happened to your neck/brainstem area from the crash or do you think this is totally unrelated (it's hard for me to tell from what you wrote)?  Your symptoms are really unusual, especially the feeling of becoming really tired and feeling anesthetized during the day ('m not sure exactly what you mean by that), but that is truly bizarre.  What do the doctors say about that?  As far as the central sleep apnea, isn't that part of the sleep study done in the sleep lab?  I had a sleep study done for obstructive sleep apnea and I thought it included testing for whether there could be a central problem involved, but maybe I'm mistaken.  

It is absolutely true about test results.  They are mainly, if not solely, what most of the doctors go by.  If the tests keep coming back negative then they don't believe there is a problem.  It would never occur to them that 1) they weren't doing the right tests or that 2) they were doing the right tests but that the tests just weren't picking the problem up at the time.  Blood work, antibody levels, etc., fluctuate, so sometimes it is a hit and miss sort of thing.   I know that my ANA has bounced from mildly positive to negative and back and my calcium levels have gone from negative to mildly elevated over the years, so they can't go by one test to determine if there is a problem.  

I, for some reason, pictured doctors in the UK as being better listeners than American doctors, but apparently not being able to listen or believe in the credibility of the patient is a universal problem physicians have.  They must learn this in med school (some learn it better than others apparently!).  

I also left lots of consultations and visits with my PCP (in fact almost every single one) with the feeling that their conclusions were wrong--they concluded I wasn't sick, I knew for a fact I was.  And this caused the friction--they didn't like it on those rare occasions I got assertive enough to challenge them on this (in the beginning I wasn't able to say anything, as the years went on I got more assertive and articulate), when I insisted that there was indeed something organically wrong with me.  So one doctor wrote in your note that you were "manipulative and crazy?"  Some of the doctors I saw (especially the neurologists) came right out and told me what they thought about my symptoms, and some of them weren't nice when they did it either.  I've been pursuing a diagnosis since '94 and actually had my first symptoms, an isolated event, 17 years ago in '90 (Horner's syndrome where my eyelid drooped, my pupil became smaller and I stopped sweating, all on the left side of my body).  I was told it was probably benign by some idiot neurologist who never even made a follow-up appointment for me and only did a chest x-ray.  In '99, after the onset of clearly neurologic symptoms, I called his office to get a copy of my records and they told me they couldn't find them.  Then a few years after that his office called me to tell me they purged them (so they suddenly found them after all those years and then they purged them).  Because of what they did I spent another 7 years (end of 2006) until I got taken seriously and got a (at least partial) diagnosis.  No neurologist even believed I had the Horner's ("The patient *claims* she had a left-sided Horner's in the past..." and my brother, who is a physician (and who has ongoing serious medical problems after a really bad car accident), was unaware that I ever had Horner's and thought I only had the ptosis (I just found that out last year).  I know I told him in the past when I went down to see him twice in '99 after getting really sick again after a bad infection, but I remember he made a comment to me about Horner's not being the same thing as (just) ptosis, and I now think that he thought I was calling ptosis Horner's syndrome.  I should have been more explicit and I should have been more assertive throughout this whole process with the other doctors and not backed off when I sensed that they didn't believe me about my symptoms.  

And yes, once you rebel, it is time to drag in the mental health professionals.  In my case, my doctors thought it was related to my past history of anxiety and depression before I ever "rebelled" and before they ever did the very first test on me.  I was labeled/branded as psychosomatic from the very beginning.  This sort of thing takes on a life of its own.  One doctor lets the next one know that he thinks it is psychsomatic, and all the way down the line you go from one to the next, and it has long since been a lost cause because by doctor number 3 or 4, you have been branded for life, and doctor #5 is almost certainly going to listen to his colleagues and not you, the patient.  By doctor #10 you might as well go home and accept that you are never going to get a diagnosis, because doctors do not find (go looking for) anything when they don't believe there is anything to find.

I saw your post with Quixotic but can't remember it all at the moment.  So do you think basilar artery migraines explain all or even most of your symptoms?  It sounds like she might have thought that and your neurologist also thought that, but you said what the neuro wrote didn't really correspond to what you told him of your symptoms.  Have you been treated for these or do you plan to be?  

I think a lot of the reason doctors don't pursue a problem systematically is because of lack of time/money.  15 minutes just isn't enough time to get to the bottom of anything, especially when it is uncommon and complicated.  And that is a good one about the lights going out.  Yeah, I bet he had no answer.  

Well, the lady you know who went 20 years undiagnosed and had horrible experiences with physicians has me beat by a little--I went 17 years.  The first four I didn't actually feel sick, but the last 13 I have.  Unfortunately there isn't a whole lot they can do for what I have, especially since they don't know what is causing it.  I was dxd with some kind of autoimmune autonomic neuropathy but they don't know if it is a primary phenomenon or part of some other (as yet) undxd automimmune disease.  I finally got taken seriously after I was dxd with severe gastroparesis last year and was sent to a major clinic twice for neuro evaluation.  I saw an MS specialist and a dysautonomia doctor.  The dysautonomia doc seems to think I have a limited form of AAN and possible hyperparathyroidism (which I am hoping I have, as it would explain some of my symptoms and it is treatable) and the MS specialist said she did not know if my autonomic dysfunction was secondary or primary in nature, and she also left the door open to a possible CNS cause (instead of peripheral neuropathy as the other doctor seems to think), and I am glad she did this, as I do not want to be labeled as having something I don't or have the door closed on something it's still possible I have (like MS), because a peripheral neuropathy just does not cover all the symptoms I have experienced (mild motor and sensory as well).  She was the one who made the comment about western medicine.  Unfortunately I do not live near the clinic so will not be returning there any time in the near future, if ever, and have been unable to find a neuro in my hometown.  

Anway, post back if you wish and have the time.  It's interesting to hear about others' experiences, especially with doctors.  I did read some on that Diana Holmes (not a book review but just a couple sites I found on her and her experiences with the doctors and her undxd hypothyroidism).  

[DragonTU84]

First of all, thank you both for your concern and generosity, as well as helping me in trying to find an answer to this madness!!!

It has litterally been driving me INSANE with just trying to find a doctor who will not "poo-poo" me away, or call it "anxiety/panic disorder and nothing else" without even a second glance, and just to mock at me later about it and ridicule me for how long and precise my description of the situation was. One doctor kept "mimicking" me by as I went through every "speck and detail" of my symptoms, and of course my mother who was supposed to be supportive of it sure didn't seem helpful at all when all she did was laugh along. It is like they all think I am just a nutcase and that I have "anxiety/panic disorder ONLY" and I need to accept that.

Believe me, I have tried my HARDEST "just to accept it." And it seems that my problems have waxing and waning points. Right now it is in a slight waning phase, and I hope it STAYS that way!! Sometimes I can go a week or two without problems, then BOOM out of the blue another bad one attacks, and then it is "back to square one again" with all of the head problems, chest pains, etc. all over again...at least until that spout/spurt passes....

And Economist (Bill), I cannot believe all that you had to go through...and you two Annie, especially for 17 YEARS?!?!?! I cannot believe doctors can be THAT conceited, naive....I cannot even find the words to properly describe it. They are all "into themselves" and think that they are ALWAYS right when the tests prove negative, and they seem to all act rather "cocky" about it, kinda like a child crying/exclaiming "haha, I'm right, you're wrong!! You're not sick!!" Only to leave the patient even further frustrated and in even further turmoil, not ONLY at the fact that a suppposedly "educated professional" is ridiculing them/degrading them, but also that they must continue to suffer endlessly while still trying to find a resolution and answer for it all....

I feel for both of you, as I myself am suffering through doctors and doctors just thinking I am some LOONEY when I KNOW there is something going on with me. I am NOT saying that Panic Attacks and Anxiety AREN'T a part of it, but I do NOT think it is part of the WHOLE PICTURE. I definately think that part of what I have suffered is panic and anxiety, and there were moments where YES, I felt anxious/nervous, etc., but I think the overall issue is a deeper underlying problem, either brought on and laying dormant until the Zoloft came about and brought it to its surface or a problem that started with my heart palpitations, chest pains and Panic Attacks in October....

And thank you for the links Bill (economist). I have taken a look at the site, and it does seem possible I have adrenal fatigue. I want to talk with my GP, but not my primary as she herself seems to be a pill-pusher and oblivious to the whole thing, and I am HOPING my secondary GP will actually listen more to me and give me her input/advice instead of just "shoving me aside."

I am also considering switching to another Psych. I may just try and switch to a Psychologist, who will hopefully LISTEN more to my sufferings and not just "push for the pills" as you call it like a Psychiatrist does. I want somebody I can talk to, get further tests for if they suspect anything else, as well as who can prescribe me meds. if necessary, which many of us have been striving for for the past several years...

~Crystal

[economist]

Hi Crystal

Glad you seem to be feeling a little better and hope it continues.

I found that I started to deal with things better once I took responsibility for my own health and got rid of the view that my doctor must always be right. You are right to look at changing your healthcare providers and should try to find somebody that you respect, can trust, cares about you and will listen. Difficult I know but I am sure they are out there.

I also found it beneficial to look beyond the confines of conventional medicine which is great for many problems but not so good for others. This is a bit of a jungle but if you want to follow this up I would recommend a paperback by Dr Andrew Weil MD called "Spontaneous Healing" which looks at when conventional medicine is best, when to look elsewhere, and what the other therapies are good at. The first section is a bit new age but the rest of it is very helpful in setting out strategies and options on how to get well. This book was written twelve years ago and since then the Weil organisation has become over-commercialised so his website is no longer particularly good.

If at any time you want to investigate the possibility of adrenal fatigue the appropriate test is the 24 hour saliva test for cortisol and DHEA. If the test is abnormal the standard first treatment is adrenal extracts but it is also worth considering  adaptogen herbs like ashwaghanda and Maca. The standard paperback text on this subject is " Adrenal Fatigue" by James L Wilson.

I wish you the best and hope that things improve for you.

Bill

[economist]

It sounds like you have had a truly awful time with doctors over the last 17 years. It is unbelievable that it can go on so long and I agree that once one doctor starts to treat you as neurotic the rest follow through the comments on your medical notes. I know, since they quoted some comments at me and I made it even worse by saying that I didn

[Annie62]

Hi Crystal,

I do hope you get some answers soon.  I don't have any answers for you, unfortunately.  You clearly have significant anxiety/panic attacks, but you know better than anyone whether there is something additional going on medically.  I have never heard of anyone having an electrical surge going up their spine or in their head from panic attacks, but I don't know that much about panic attacks (I do have significant problems, myself, with anxiety, but of a totally different nature).  I could tell you were clearly frustrated with the way it was going with the doctors and all the negative test results (and even your family), and that is why I posted back, as I have been there myself for a long, long, time.  Even though I finally got some answers at Mayo recently and now my doctor knows my complaints weren't imaginary, that hasn't stopped bad things from happening:  no apology from my PCP, instead he dumped me last month (and he wasn't nice about it, either--as if I was the one who had done something wrong--he said it was because I didn't "trust" him); and a good neurology practice in town has refused to take me as their patient and would not give me a reason, so I've been in a bit of an emotional upheaval myself lately (I think they are worried about being sued or being involved in a lawsuit).  As I told my brother (who is a doctor), let them think it, I hope it burns a hole in their souls (it wouldn't be a drop in the bucket compared to what they did to me all those years).  Anyway, it says more about them than it says about it me.

I think you mentioned you had an EEG done looking for seizures, but did they do a longer one-the overnight kind-where they are more likely to pick up a seizure if one is happening?  I don't know a whole lot about seizures, but they probably were a concern if your doctors did an EEG on you.  I do know that many of the anti-depressants/anti-anxiety drugs can trigger off seizures, and if you have a seizure disorder (diagnosed or undiagnosed) these drugs are contraindicated.  (You said you got worse after being on the Zoloft and Zoloft is one of the drugs that can trigger off seizures in someone prone to them, and you mentioned another SSRI, can't remember which one, which you also got worse after taking).  I actually had multiple grand mal seizures from an antidepressant when I was 19 years old-long time ago (although I took an OD of it).  All the same, many of these drugs are contraindicated in seizure disorder.  It might be something you want to research further (there are all different types of seizures) and type in your symptoms in conjunction with seizure and see what you find.  If you thing it might fit then I would ask your GP about it again and see if she thinks it worthwhile to do a longer EEG on you.  I think the EEGs are kind of like the EKG, if you're not having any seizure activity (or irregular heart rhythms at the time of the test) then they don't show the complete picture.  

[Annie62]

Bill,

I wish you good luck with figuring it all out.  I hope Quixotic is helpful in her leads (by the way, I believe she is a woman, not a man) and you get some answers from your doctors soon.  Sorry if I in any way offended you with my political views (it's just that I think one's political beliefs carry over into life in all sorts of ways--the way people treat one another/their humanity or lack of it, etc.); I probably shouldn't have brought it up on this board, though.    

Anyway, I hope things improve for you and you get the answers you need to make you feel better.  That's what I wish for all of us.  It was good talking to you.  Your experiences were interesting to hear about.  

[economist]

Hi Annie

It has been good good to talk to you about problems with physicians but  I think I am now running out of things to say. I live in a small town and know quite a few people who have had similar problems so there must be a very large number wordwide, The ones I know are endocrine patients(mainly hypothyroid) who were missed because orthodox blood tests were normal. All are now patients of Dr Barry Durrant Peatfield, who diagnosed them on the the basis of his clinical judgement and some urine and saliva tests, which are outside of the current medical orthodoxy. It was also Dr Peatfield, who thought I may have adrenal fatigue but even he found my case a little challenging! Dr Peatfield is a good doctor with an old fashioned manner reminicent of the 1950's. His patients think he is wonderful but because he was prepared to diagnose on clinical judgement, and not just blood tests, he fell out with the British medical establishment. He has also had bad experiences with endocrinologists who generally hate him. He was the doctor who diagnosed Diana Holmes. We have another doctor in the UK called Gordon Skinner (who also treated Diana Holmes) who is currently having similar problems with the medical establishment but is still registered.

Once I realised that I was having problems with physicians I started reading books by physicians who also had issues with the usual medical approach and found comfort and reassurance that I wasn't completely mad. I mentioned Andrew Weil's book to Crystal ,which is very well balanced and makes the same points that we have been raising as well as looking at other ways of getting better. There is also a book called "What Doctor's Don't Tell You" which is a little over the top in criticism but still good reading. There are quite a few more but now  I am beginning to sound like a booksalesman!

I think you are right that I may have more than one condition. I still think that part of my problem is with adrenalin and that it goes back to the train crash. The sleeping might be something else but it also could be connected.and I am convinced that it somehow involves the brain stem. Quix is looking at it with me. He really is a good doctor and I wish there were many more like him.

[Annie62]

Hi Bill,

Regarding British doctors being better, well, as far as skills/knowledge go, I thought they would be comparable to American doctors (a few bad, most in between, and some really good), but I did think they would be better listeners than here.  The reason I thought that was because my impression of England/British people in general is one of being more communicative, open-minded, where my impression of America is becoming increasingly one of
curt arrogance, unwillingness to listen to what others have to say (maybe that is partly based more on my growing disgust with American political policies and the Americans who chose those policymakers, but that's another forum, another time).  I did not know that most British docs had a 25-year contract with the government (although I am aware you have national health--like all western countries except America, of course).  I guess that affords them some immunity in some respect (and perhaps a feeling of untouchable arrogance).  As far as privileged, well, any doctor in America, especially in the high-paying specialties, leads a privileged lifestyle with regards to income and what that can afford.  I have no doubt that most doctors vote/are Republican (conservative in Britain) in order to keep as much of their money as they can.  Even at my local hospital when I went for testing last year every waiting room had the Fox News Network on (you can't change the station).  It's nice to know our tax dollars are paying for that propaganda.  I imagine the hospital board (full of conservative doctors, no doubt) decide which news station is put on.  So, it doesn't surprise me that I was treated the way I was.  People of that persuasion/bent aren't exactly good listeners or compassionate and able to relate to the suffering of others, in my view.  I have no doubt my PCP (who terminated me last month supposedly because I didn't "trust him"--a totally bogus reason (I think in actuality he is worried I am going to sue him as well as other doctors-which I'm not)--is ultra-conservative.  I can tell by his words and the way he treated me.  In my last apppointment he tried to prevent me from saying what I wanted to say every time I tried to talk about how he didn't believe I was really ill over the years.  You might think I'm crazy, but it's not hard for me to tell what a person's political bent is based on the way they treat/relate to others (I don't even have to ever talk about politics with them to find out whether they are conserative/intolerant or progressive/liberal and more humanitarian in their views).  If you or others who read this are conservative, I guess you/they won't like what I wrote, but what can I say...

I am glad to hear that you were not hurt in the train accident-amazingly.  That had to be incredibly frightening while it was happening, not know whether you were going to live or die.  And I am glad you quit work when you did if it was causing your mind/body that much stress (and your successor died a year after starting your job-very unfortunate).  I don't know if that could have triggered off some kind of chronic endocrine problem in you or not, but it sounds like you think it might be possible.  

It sounds like you should follow up on Quixotic's suggestion about the narcolepsy, especially if it hasn't been ruled out as prior physicans suggested to you.  I don't even know what tests they do for that or if it is only observed in order to diagnose, but I would read up on it if I were you and if you think it is still possible I would take that literature to your doctor and ask to be tested for it.  It's possible you have a couple different things going on.  I always thought all my symptoms were due to one thing, but I now think possibly it's at least two things-not only autoimmune autonomic neuropathy and possibly hyperparathryoidism (I just got an appnt with a new PCP and will be seeing him tomorrow and plan to ask him about my calcium levels, as they suggested at Mayo they be repeated).  

I don't know much about the saliva tests for hormones.  I do know that endocrine (as well as other levels) fluctuate from blood test to blood test), and that a lot can be missed if tests are done only every so often/randomly.  I had an elevated calcium at Mayo in Dec., but my calcium was normal in March when they repeated it.  I looked back and saw that I had a borderline elevated calcium in 1994 (!) when I first started feeling sick, so I'm actually hoping I do have hyperparathryoidism because it is treatable and could explain at least some of my symptoms.  

I have had the same experience with regards to friends and family.  My family has no idea how sick I have been in the past, with the exception of my mother.  Even my brother didn't know-I told him some stuff but not everything; he worked me up early and even several years into my illness for different autoimmune/neurologic disease, but he was limited in what he could do (due to distance and insurance matters).  After his accident I pursued it some with him, but because of his health problems and his sounding extremely worn out and having trouble breathing, I didn't feel justified in continuing to call him, asking him what he thought, especially since all the tests kept coming back negative and I was made to feel like a fraud by my doctors here.  He would ask me what the neuros would say and I told him that they thought it was psychsomatic (which they all did), and I think it's possible my brother eventually started to think the same thing as of about 2 1/2 years ago.  I don't know that for sure, as he never said anything to that effect and I didn't ask him, but I can understand after all these years of nothing showing up in my tests why he might think that.  After they found the severe gastroparesis on EGD/scan, I called him up and started to talk to him again about my symptoms (I knew he thought that finding was significant neurologically) and he started to talk to me again about tests, etc., (sounded more interested) and things started to go in the right direction after that.  

Yes, even the hour-long consults weren't enough time to get to the root of the problem.  Half that time is spent with them looking over your notes, examining you and not finding anything, or asking you irrelevant and offensive questions like "Are you suicidal right now?"  Yes, I actually had one neurologist ask me that at a university hospital.  I said, I haven't been asked that in 15 years (past major depression, etc.) and told him he was doing me an injustice.  I guess when I said 15 minutes wasn't enough time I was referring to my follow-up visits with my PCP, not the consults with neuros, etc.  

Here in the US there are university hospitals connected with med schools and places live the Cleveland Clinic and Mayo (where I eventually went), but the problem is that there is no point in going to one of these places if your PCP and the referring doctors think your syptoms (symptoms) are psychosomatic, as those notes where they write their opinion is sent to the new doctor/clinic and influences greatly their thinking (I know from experience).  It actually almost happened to me at Mayo, apparently due to the neuro there not being told I had the severe gastroparesis (which is a neurologic finding), and they called me the day before I was supposed to leave to go up there and told me they had to reschedule my appointment (which was made months in advance).  So, I almost got discounted there was well.  That's why I never went up there before on my own (I didn't need a referral, I could have gone on my own with my current insurance).  I knew that until a test showed something that I would continue to be discounted--and that is the way it evolved.  

It sounds like you should pursue the basilar artery migraines and the narcolepsy.  I wonder, if you do have either, if there is a connection between the two.  Maybe Quixotic will give you some good ideas as to what you can say to your GP when you see her/him next.  

[marie817]

I have been treated for bipolar and painful whiplash and a tear inside my shoulder and I also have seasonal disorder ,,,when this winter hit I went down WORSE THAN EVER PLEASE HELP ME,, In January the horseraces start back up in Claremore , Oklahoma,,,my fiance and his dad are into this and have been for years so this year instead of comuting we are going to rent stalls and set up a 5th wheel there ,,,I am having such a hard time with the factual idea of moving temorarily with all 3 of us being there ,,my sis died this year and ever since I just want to stay  away from stores and ect. so please help me get out of this rut . This has lasted way to long ,,,I should have allready swung back to manic and how do I ease myself back into being social again ,,,,PLEASE HELP ME <I WANT TO WANT TO BE OUTGOING AND THE OLD TINA ,,WHO COULD HANDLE JUST SHOWERING AND GOING OUT TO THE STORE ,,,,HOW AM I GOING TO GO TO CLAREMORE AND LEAVE MY SAFE ZONE INSIDE MY HOUSE,,,I LIVE IN THE COUNTRY ABOUT 7 MINUTES FROM TOWN AND I DO HAVE NIEBORS BUT I STICK TO MYSELF AND JUST A HAND FULL OF PEOPLE THAT I FEEL COMFORTABLE WITH AND THEN SOMETIMES I DON,T EVEN WITH THEM AND MOST THE TIME I WON,T EVEN TALK ON THE PHONE,,,IN THE SUMMER I WAS SO MUCH BETTER WHAT HAPPENED/? AND HOW DO WE FIX ME/? I CAN,T WAIT FOR SUMMER AND WINTER IS JUST BARELY HERE  PLEASE HELP ME AND THANKYOU SOOOO MUCH ,,,,,TINA