Adrenal Fatigue??

[DragonTU84]

Hey all,

My name is Crystal, and I posted on here awhile back complaining about heart palps, chest pains, increased heart rate, sweaty palms/hands, cold extremities, head jitters/vibrations, electrical sensations in the brain and up and down the spine,  etc. that seem to be attributed now to anxiety and panic, along with an adverse reaction to the Serotonin in Zoloft and other SSRI drugs.

However, I have also been posting on the Neurological forum, and somebody brought to my attention the possibility that I suffer from a condition called Adrenal Fatigue, due to stress and over-use of the adrenal glands. It would explain my unpredictable panic attacks and anxiety, as the adrenal glands control the levels of adrenaline and cortisol released in the body, along with the mood swings I have suffered from for the past several months (I am generally happy, but when something upsets me I get stressed, cry, upset and frustrated easily). Yet I want to know what you all think??

Here is a link comparing the symptoms of Adrenal Fatigue to HypoThyroidism:

http://www.drrind.com/scorecardmatrix.asp

Here is another link just briefly mentioning the causes of Adrenal Fatigue:

http://www.womentowomen.com/adrenalfatigue/index.asp#causesexhaustion

Please give me your input/advice on this. Thanks!!

[RCA7591]

If you suspect Addison's ( adrenocortical insufficiency), consulting an Endocrinologist would be the first step.

Addison's is the result of decreased Cortisol or increased ACTH production. It is treated with replacement steroids (Prednisone).

The incidence is about 4/100,000 persons (fairly rare).

Chief symptoms are:

-Weakness
-Fatigue
-Orthostatic Hypotension (fall in blood pressure upon standing), which would result in dizziness or fainting
-Weight loss
-Dehydration
-Decreased cold tolerance
-Hyperpigmentation of the skin

In cases of adrenal crisis (life threatening condition), the signs are:

-Profound asthenia
-Severe pain in the abdomen, lower back, or legs
-Cardiovascular collapse
-Subnormal body termperature

Lab findings:

-Low serum sodium
-High serum potassium
-Elevated BUN
-Low fasting blood sugar
-Low Cortisol (plasma and urinary)
-Elevated ACTH
-Abnormal ECG - Prolonged PR or QT intervals

Info taken from Merck Manual 14th edition.

Generally, a person with Addison's would present with more severe symptoms than those that you described. More severe forms of the disease present with adrenal crisis, and are medical emergencies.

A quick test to include or exclude this is a 24-hr urinary Cortisol collection, or 17-Ketosteroids. Serial (multiple) tests are usually required to confirm the diagnosis.

-Ryan

[jgoo]

im not sure but i have had the sweaty palms and heart racing, and mood swings to where when i feel like this i get mad and aggrivated, i beleive its anxiety, my hands will sweat profusely when i feel like this, my heart will race, i get cold chills....i get white spots on my arms and palms i dont know if you get that, but it sounds like its anxiety for sure...i take paxil for it, and i have had most of these symptons that you are explaining, sounds like anxiety for sure, but you might go to your dr and check, they told me its anxiety and of course put me on the paxil which helps..good luck

[DragonTU84]

Hello Ryan,

First of all, I thank you for your response. I do NOT suspect the full disorder, Addison's Disease. I am referring to something more minor and slightly different, namely ADRENAL FATIGUE. It occurs when the person has over time undergone SO much stress that it stresses out/"fatigues" the adrenal glands and insufficient releases of cortisol and adrenaline are released throughout the body, resulting in panic attacks, some fatigue, cold extremeties, low basal body temp., etc.

It is not full-blown Addison's, as you asked me about. Please read the links and let me know what you think. The links were in my first post on here.

It also explains that most sufferers are of the A blood type, and this could just be coincidental, and I know that my blood type is A+. It was just worthwhile looking into, I thought, and I wanted your all's input.

I apologize for my rather abrupt/short responses, but right now the entire house smells of gasoline from some unknown source, and it is causing me to get a headache and gag in my stomache, so forgive me if my responses are rather short and brief for awhile.

~Crystal

[DragonTU84]

Thank you for your concern, jgoo (and I have now moved the laptop to another part of the house so I can breathe more easily and not have to be struggling or holding my breath from gagging as I write).

Anyway, the reason that I am now bringing up the possibility that I suspect something else is going on is due mainly to my adverse reactions to the SSRI class of drugs. My Psychiatrist is extremely suspicious with my reaction to the medication, especially since with all of "his years working" he hasn't seen one react so QUICKLY to an SSRI negatively.

When I informed him of the electrical sensations/surges, head jolts and vibrations, as well as tremors and odd head feelings (feeling as though I was about to go into convulsions or my brain would split in two) I would get immediately upon beginning the med., he became suspicious something else could be underlying my panic disorder and attacks, aside from my Mitral Valve Prolapse which I am already aware of.

When I read about Adrenal Fatigue and also how many sufferers sometimes are more sensitive to some meds. as a result, as well as many of the other symptoms that seemed to be explained, I was just wondering if it could be a possibility??

I mean, maybe I am just an oddball and I just have an adverse reaction to serotonin. Or maybe it was too much for my body to handle, so my body reacted physiologically/psychologically with all of the physical problems I had to endure.

I really just don't know, and am throwing things (as Adrenal Fatigue) out there to explain my other symptoms aside from the anxiety and panic as well as my reaction to the SSRI's. It was a first for my Psychiatrist, that was for sure.

I think even HE is at a loss, and he specializes in people suffering from Panic Disorder and GAD. I am taking Lorazepam 2 MG 3X daily (6 MG total), and that is about all I can take esp. with my reaction to the SSRI's.

I still want to find the root of all of this, though. As is it merely Panic Attacks/GAD/Panic Disorder, or is there some underlying problem that the SSRIs are bringing out??? Or was it just too much for my body to handle, and maybe in fact my body is supplying enough serotonin on its own??

Any more thoughts/ideas would be greatly appreciated!!!

~Crystal

[RCA7591]

"I think even HE is at a loss, and he specializes in people suffering from Panic Disorder and GAD. I am taking Lorazepam 2 MG 3X daily (6 MG total), and that is about all I can take esp. with my reaction to the SSRI's.

I still want to find the root of all of this, though. As is it merely Panic Attacks/GAD/Panic Disorder, or is there some underlying problem that the SSRIs are bringing out??? Or was it just too much for my body to handle, and maybe in fact my body is supplying enough serotonin on its own??"

-end quote-

Hi Crystal,

Ativan (Lorazepam) 2 mg TID is a fairly large dose, large enough to seriously sedate some folks. If that dose has little impact on your symptomology, I too would be looking for an underlying disorder.

The only way to know if your body is producing the correct amount of Serotonin is to measure it. If SSRI's have such a profound effect on you, that in itself would be a contraindication to the future use of any SSRI. Furthermore, it may suggest a malfunction in the autonomic nervous system, known as "Dysautonomia". SSRI's are "stimulating", the opposite of what you want.

Dysautonomia could indeed explain some or all of your symptoms. You may want to mention this to the Psychiatrist.

A trial dose of Klonopin 1 mg BID and Inderal 10-20 mg BID (must be individualized) may prove to be of some value. Inderal is a non-selective beta-blocker, and blocks the effects of Catecholamines (Adrenaline). Klonopin and Inderal are the standard treatments for Dysautonomia. While they help to provide some *balance* to the autonomic nervous system, they are not cures (there is no cure currently).

As far as adrenal fatigue is concerned, Cortisol would either be normal, or mildly elevated. You can't "run out of Cortisol", unless there is some disease process like Addison's.

You can, however, run out of Endogenous Catecholamines, which are the body's Adrenaline stores used in times of crisis. Recurring anxiety attacks or an acute bout of stress can deplete these Adrenaline stores, leaving you fatigued *temporarily*. Dysautonomia and anxiety states are two causes for the depletion of Endogenous Catecholamines.

If no underlying Endocrine etiology is found, I'd highly consider Dysautonomia. But you definitely need to include or exclude an Endocrine source for your problems, hence my recommendation to consult with an Endocrinologist.

"Anxiety" is a term that is used loosely to explain the unexplainable.

-Ryan

[DragonTU84]

Hello Ryan.

Thank you for all of your help! You have no idea how appreciative I am with all of the assistance you have given me.

I DO have one other question, though.

Do you suspect I could possibly be suffering from Lyme Disease or some other TBD (tick borne disease)??

It would explain a lot of my odd neurological/physiological reactions while on the SSRI's, as well as the SUDDEN ONSET of Panic Attacks and thus Panic Disorder with no seemingly underlying anxiety, aside from everyday stress while trying to finish school.

I found some articles online about 3 cases of women in PA who suffered from sporatic Panic Attacks and Disorder and the root of the cause was Lyme.

Here is the link to the articles:

http://www.thehumansideoflyme.net/articlelist.php?mid=4

Also, here is a link to a PDF file dedicated to Psychiatrists who are dealing with patients with odd symptoms atypical of Panic Disorder or GAD:

http://www.ilads.org/PsychiatristBrochure.pdf

Please let me know what you think. Thanks!!

I was given a Lyme Titer test, which came back negative, yet I heard that it is even worse than even the ELISA test for testing for Lyme, so its efficiency in ruling out the disease is null. I heard the Western Blot is more effective...

Yet what do you think?? Do you think it could be lyme?? Should I also mention that to the Psych?? Or should I mention dysautonomia??? Which seems more prevalent to my odd symptoms:

+SUDDEN Severe chest pains and heart palps resulting in panic attacks

+typical panic fear of dying or having a heart attack

+frequent attacks since (daily for awhile after 1st attack)

+numerous ER visits, all told me "only PD or anxiety/stress"

+took Toprol XL for chest palps and pains, helped a little, but problems persisted

+then started Zoloft: shortly before was STILL having SOME bad panic attacks with chest pain

+lst day of Zoloft: SEVERE lightheadedness/wooziness-stopped for a short while

+still experienced chest-related panic attacks and heart palps, so started again

+2nd day on Zoloft, had first ep. of HEAD ELECTRICAL SURGES, TEN-FOLD PINS AND NEEDLES, SEEING BLOTCHES, FACE NUMBNESS, AND A FULL-OUT PANIC ATTACK

+next day-felt EXTREMELY FATIGUED, could barely bring myself to speak or talk/walk, just NULL all day long/BLAH

+head attacks CONTINUED: one lasted OVER 2 HOURS off and on

+attacks now mainly "head related"-chest problems dissipated/vanished

+attacks later in treatment with Zoloft became DAILY

+STOPPED Zoloft after a month of being on 25 MG COLD TURKEY:

+resulted in WORSE attacks:

+felt as though brain was splitting in two or about to go into convulsions, even though I was completely conscious

+often one-sided attacks-left or right-and it left limbs going numb/no feeling, and even one time my ENTIRE RIGHT LEG KINDA BUCKLED AND WENT LIMP/I COULDN'T MOVE IT!!!

+stroke and seizure like feelings in brain, even though I am completely conscious and aware

+eye twitches/spasms

+random muscle twitches/spasms and tightening

+continued electrical surges up and down spine and in brain

+shaking/tremors??_I start shaking and trembling all over

+feel flushed/hot flashes, then hands grow cold and my body temp. drops

*lightheaded/woozy upon sitting up or standing sometimes (not always)

I AM taking the Lorazepam 2MG TID, and it has helped some in the frequency and severity of the attacks, but I still get them occassionally nonetheless.

Taking a multivitamin and eating better also has seemed to help. I don't get the leg tremors or anything like that anymore, and most of the feelings of seizures or strokes have subsided (for now).

What do you think Ryan?? Any more of your intellect to help me out?? Should I try to see a LLMD (Lyme Legit Doctor) or do you think Dysautonomia is more prevalent for my symptoms???

Also, have you heard of MVPS, also known as MVPD (Mitral Valve Prolapse Syndrome or Mitral Valve Prolapse Dysautonomia)? What is your input on that as well??

[RCA7591]

Hi Crystal,

Lyme is caused by the bacterial Spirochete "Borrelia Burgdorferi". The most prominent manifestions are:

(1) EM (a large "bull's eye" rash with central clearing)
(2) Progressive joint involvement
(3) Temporary cardiac involvement in the early stages
(4) "Lyme Arthritis" in the advanced stages
(5)  Neurological manifestions in the advanced stages, Bell's Palsy is an example, optic neuritis is another.

The other symptoms on your list are non-specific for Lyme, and could be caused by anything (including anxiety).

Due to overdiagnosis in the mid 80's to early 90's, it is often considered by the mainstream physician to be a "quack" disease (and indeed, it largely is overdiagnosed). 99% of those who think they have Lyme don't. Lyme disease is somewhat uncommon. LLMD's are quacks. There is one just north of me, his last name is Swami. Avoid any doctor claiming to be a "LLMD". Such doctors use unconventional methods to "treat" their so callled Lyme patients. Among the worst of these treatments is the infusion of Hydrogen Peroxide intravenously, which is extremely dangerous due to the risk of embolism. I personally know of three folks who were crippled by an LLMD.
One had epilepsy, one had recurring Rheumatic Fever, and the other had panic disorder. The one with Rheumatic Fever died of complications. In each case, the correct diagnosis was made by a specialist, and not the LLMD. None of these folks had Lyme, but they were convinced that they did. Anything you read online about Lyme (other than the info on the CDC website) is not factual.

If Lyme is truly of concern, a Western Blot IgM/IgG may be performed, alone or in combination with a Lyme PCR test. The ELISA titer is highly non-specific, and often misses the disease. If the WB is negative, you can put your mind at ease. I would recommend a standard lab, such as LabCorp or Quest. The so called "Lyme Labs" always send back false positives. Such labs are not approved by the FDA, requiring patients to pay "out of pocket". So called "reactive bands" are non-specific, only a few are specific towards Borrelia. Syphillis can also cause a false-positive test.

In addition, a CBC with differential will be suggestive of bacterial infection (increased neutrophil counts, with vacuolated neutrophils shown on the blood smear), with either a very high total WBC, or an exhausted WBC from chronic infection.

In the early stages, Lyme is treated with high dose PO Doxycycline (200 - 400 BID), and with intravenous antibiotics (Rocephin, Doxycycline) in the later stages. If multiple diseases were transmited by the offending tick (ie: Babesia), the addition of an anti-malarial (Mepron or Plaquenil) will be required.

Do I think you have Lyme disease? No. Will a mainstream doctor suspect Lyme? Only if there are clinical manifestations to suggest it. An infectious disease doctor is well versed on Lyme and other infectious diseases.

Dysautonomia has no known cause, but has been linked to MVP and other cardiac conditions. Dysautonomia can occur with or without MVP.

Based on what you've written, IT is likely Endocrine or Autonomic in origin.

Toprol is cardio-selective, and is of little benefit in Dysautonomia. Inderal is not selective, it blocks beta at all receptor sites in the body (heart, brain, lungs). Therefore, it has a more profound effect on the nervous system.

What I would do before having any Endocrine work-up is this: Trial dose of 20 mg BID Inderal and 1 mg BID Klonopin. Try this combination for one month, and see if your symptomatology improves. If it does (by a large margin), it would be safe to assume that an autonomic manifestation is at work (Dysautonomia, Panic Disorder). REFRAIN from using an SSRI or Tricyclic compounds, as this makes the problem ten times worse. These drugs are stimulating.

If the combintation outlined above fails to deliver positive results in one month or less, a complete Endocrine work-up is indicated. Here is the work-up that I would request for myself:

-Random Cortisol Level AM and PM, along with 24 hr Cortisol AND 17-Hydroxyketosteroids. IF POSITIVE, an MRI of the Pituitary, CT scan of the chest, and CT scan of the abdomen.

-Parathyroid work-up (parathyroid hormone level, serum calcium level, urine calcum level). IF POSITIVE, a TC99m Sestamibi scan of the Parathyroids to identify the offending gland (you have four of them).

-Thyroid work-up (TSH, free T3/T4). IF POSITIVE, your physician will guide you in the right direction.

-Pheochromocytoma work-up: (plasma Metanephrines, 24-hr urinary fractioned Metanephrines and Catecholmaines). IF POSITIVE, a CT scan of the abdomen to identify the offending adrenal ademona (tumor).

-Aldosteronism (measure plasma Aldosterone). IF POSITIVE, a CT scan of the abdomen to look for the offending adenoma.

This work-up is absolutely comprehensive.

Endocrine disorders cause anxiety, and a host of other unusual symptoms. Autonomic disorders also cause a constellation of unusual symptoms, often with no underlying cause. The nice thing about Endocrine disorders is that they are usually 100% curable (but most of us aren't that lucky).

No more reading up on tick borne diseases!

-Ryan

[DragonTU84]

First of all, thank you for your response RCA. Yet who can I get to issue me a Western Blot test (as I am already aware the ELISA and Lyme Titer tests are pointless)?? I just want to rule out the possibility of Lyme, and SUCCESSFULLY rule it out with a legit test.

I wish I could just KNOW or have a hunch as to what is going on with me aside from diddly-daddling back and forth between quack doctors who THINK they know what they are talking about. You have no idea how sick of it I really am. :( I think my Psychiatrist is the only one not closest to a quack, along with my second GP.

I already had I don't know now HOW MANY complete Thyroid checkups, which ALL PROVED OUT NEGATIVE AND IN THE CLEAR!! I am SICK of doctors automatically just issuing a THYROID CHECKUP!! I already know now after about 20 tests that my THYROID IS FINE DAMNIT!!! :( So the thyroid (t4, t3, and tsh) tests are all unnecessary...I stopped counting the amount of tests I had for those AGES ago!!

Yet how about dysautonomia then?? Can you provide me with links or proof as to how it relates to my symptoms??? Like the head jitters, leg numbness and tremors, electrical sensations, ya name it??? I would love further info. on it, yet I'd also like to see relevant links with either particular individuals suffering from Dysautonomia who are going through similar or exact situations I am in now or links listing all of the symptoms, etc....

I know there are different types/sorts of dysautonomia, and the only one that SORT OF relates is Mitral Valve Dysautonomia. It does NOT explain the remainder symptoms though, only the chest pains and heart problems and sensations I used to get, along with the Panic Attacks. The head=related symptoms aren't even mentioned or seem to be involved/included. Also, I have still read MANY success stories from patients claiming to have MVPD/MVPS and the SSRI's had no effect on them and benefited them...unless they truly didn't suffer from the Dysautonomia...

Any other links or anything for further assistance to help me out would be greatly appreciated! Thanks so much for all of your help so far Ryan!!

[DragonTU84]

I am guessing you are a very busy man, but I would still love ALL the information you can provide me with Dysautonomia and the possible symptoms, links or books maybe I can get with further info., how I can get properly diagnosed with it, basically whatever you can provide. I have found this one website based on Mitral Valve Dysautonomia/Mitral Valve Prolapse Syndrome, and there was a link from their main site called "The Mitral Valve Prolapse Syndrome Personality" or something like that. and I almost cried when I read it...how much it sounded like me, my struggles with my problems and how I was growing up...it all fit me PERFECTLY.

I have always been a fast talker, a "perfectionist" when it came to schoolwork, and it all described me and some of my symptoms and thoughts to the T. I truly do think Dysautonomia is a cause of my problems, as I was reading somewhere else that during the formation of the mitral valve of the heart in prenatal formation is around the same time the autonomic nervous system develops. So that is why a lot of times they link problems with the mitral valve as linked to problems with the autonomic nervous system (or Dysautonomia), because they believe it to be this defect during prenatal formation to cause prolapsing of the valve, although it is just theory. Deep down inside, I KNEW that somehow my problems had to be linked to my Mitral Valve Prolapse, even if not directly...and the problems I suffered as a teen, in October and even now just all now make sense, as well as my mindset and other factors. I could just never put my finger on it though as to HOW it was related, and now I know...

Thanks Ryan, and I HOPE to hear from you soon with more links, book references, ANY information you can provide for me. Now I am going to take action to help create my OWN cure, instead of listening to doctor quacks telling me it's "just panic attacks and anxiety," even though that IS a symptom. I ALWAYS knew something else was going on...but I couldn't put my finger on WHAT.

So any info. YOU can provide Ryan, as well as perhaps how I can go about receiving proper testing and treatment for it would be greatly appreciated. I think my psych. would think I'M the looney if I told him "look, I have Mitral Valve Prolapse Dysautonomia, and I want the med. to help it." I even MENTIONED it to him once, and he said he knew SOME about it, but not much...then he just kind of PUSHED IT ASIDE. I think I am going to go to my second GP for this one...she was the ONLY one who seemed to suspect something outside of normal anxiety was going on. Even tho the Psych. suggested he thinks something else is going on, I think he would disregard Dysautonomia as the cause, and then probably refuse to listen to what I have to say UNLESS it is Panic or Anxiety related.

ANY help you can provide would be appreciated! Again, thanks SO much!! You are the only other person who suspected Dysautonomia when I considered it awhile back, but since my Psych. shrugged it off so I thought nothing more of it.

~Crystal~

[RCA7591]

Hi Crystal,

To address some of your questions:

(1) The Western Blot IgM/IgG for Borrelia Burgdorferi: Your GP can order this simple lab test, although he may be hesitant to as this disease is uncommon. Have the laboratory tubes sent to your nearest LabCorp or Quest diagnostics. Both will offer the WB test. The test is covered under your insurance. If the Western Blot is negative (only certain bands are reactive for Lyme), you do not have Lyme disease.

(2) Numerous Thyroid tests would exclude the possibility of a Thyroid condition. No more work-up is indicated. Thyroid panels are a commonly ordered test whenever cardiac manifestations are present, thus you had many of them.

(3) There isn't a great deal of information avaliable about Dysautonomia, although there are some online websites of limited credibility. I would suggest searching Google under "Dysautomia" to view the latest research on the topic. Dysautonomia is more of a clinical diagnosis, as there are limited physical or organic abnormalities linked to it at present time (with the exception of MVP).

(4) The proper diagnosis of Dysautonomia is usually made by a Cardiologist who specilaizes in the disorder when a patient presents for cardiac symptomatology, but has a lack of physical findings to explain the symptomatology. If MVP is present (even to a slight degree), the diagnosis is easier to make. Even without MVP, the diagnosis may still be made. Usually, there is *some* small underlying disorder (a slightly abnormal ECG, a mid-systolic click or murmur, or other very mild cardiac abnormality). Cardiologists who specialize in Dysautonomia are generally located at major medical centers or teaching hospitals. A standard Cardiologist would dismiss the symptomatology as "anxiety" after performing a work-up.

(5) A Psychiatrist has a vested interest to diagnose and treat psychological and psychiatric etiologies, therefore, a Psychiatrist would rather pin the label of anxiety or panic disorder, rather than Dysautonomia. Indeed, all of these conditions bear some similarities, but in the case of Dysautonomia (particularly one caused by a mild cardiac defect), it requires the addition of a beta-blocker to be treated successfully.

You could certainly ask the Psychiatrist about Dysautonomia, and see if he will provide a trial dose of Inderal 10-20 mg BID in combination with Klonopin 1 mg BID. Beta-Blockers and a long-acting Benzodiazepine are the treatments of choice for MVP Dysautonomia (and other forms as well).

As I mentioned, it is a clinical diagnosis (meaning there aren't any specific tests to detect it). Usually, the only finding is mild MVP or Mitral Regurgitation, along with sinus tachycardia and non-sepcific ECG changes.

If the Psychiatrist will consider it, a direct crossover may be made from Ativan to Klonopin. The only other change is the addition of the Beta-Blocker (Inderal, Blocadren, or Corgard). A newer Beta/Alpha blocker known as Coreg also works very well (but it is expensive). I've had good results on Atenolol and Klonopin, but I don't recommend the Atenolol, as it is cardio-selective.

In the mean time, I will try to dig up some info on Dysautonomia as it relates to your symptomatology. I think some of your symptomatology was partially due to the use of SSRI's. When focusing on Dysautonomia, it is important to know the "chief symptoms" (those that bother you the most). Any secondary, or "vague" symptoms would likely improve once the chief symptoms are addressed. Therefore, if you do seek the advice of a Cardiologist, focus only on the chief symptoms. The more symptoms you give, the more you appear to be "anxious" or "crazy". Handing him a list of 30 symptoms is a bad idea. Focus only on the main 5-7 that truly disturb you. Do not type up a list, and do not hand him print-outs from the internet. Describe their order (which symptom appears first?), frequency (how often do they occur?), and duration (how long do they last?). If there are any known triggers (ie: what sets off an attack?), be sure to mention those as well.

One thing is for certain: It isn't anxiety alone (you would've responded to the Ativan largely if it was).

-Ryan

[cal7902]

Crystal-

I was actually diagnosed by a cardiologist with dysautonomia.  He was certain after listening to my symptoms that I would have MVP but I have had many cardio workups (stress tests, echos, ekgs) and there have been no signs of MVP.  He said that it can exist without MVP.

He prescribed Klonopin and Corgard.  It has changed my life.  Here is a link to a thread where I discussed this in detail.  

http://www.medhelp.org/forums/AnxietySupport/messages/680.html

You can also check out http://www.ndrf.org/

I feel for you and I hope you can get the correct diagnosis.

[DragonTU84]

Hello again Ryan. I truly appreciate all of your responses.

You have certainly answered a lot of the questions I was asking thoroughly and intelligently. I do have one remaining question for you, however,

Do you know by chance HOW I can now go about finding a specialist/doctor who knows about Dysautonomia and how to properly treat it. Sure, I could easily go to my doctor and ask for this or that medication, but I'd rather be able to find a doctor (a Psychiatrist, Cardiologist, Neurologist, etc.) who is well versed with Dysautonomia, the types, as well as the proper treatment for the problems and as well as be somebody I can talk to to discuss my problems.

I reside in Maryland, and am uncertain how difficult it will be for me to find such a doctor. Right now I am at a loss. My Psych. specializes in Panic Disorder, GAD, Panic Attacks, and has HEARD of Dysautonomia but doesn't know much about it so wouldn't be able to truly help me out, plus he DISCREDITS all of the readings and findings on Mitral Valve Dysautonomia, so he would not even WANT to provide treatment for it.

My GP, who I saw today, knew NOTHING about Dysautonomia, not ANY varient of it, and just kind of shook her head and seemed at a loss cause. Obviously too since she knew nothing about it, she couldn't provide info. to other doctors who know more about the syndrome/dysfunction.

She did prescribe Inderal for me in case I decide to take it since I told her what YOU TOLD ME, but she was only going by what both you and I had said, and I'd rather find somebody who KNOWS what they are prescribing and whether or not it will benefit me, based on my history, my body type, my current situation, etc....basically one who understands the disorder and is able to work through it with me as well as prescribe meds. when necessary.

Any help you can provide would be greatly appreciated, even where I can START looking!! Thanks so much for all of your help Ryan!!

~Crystal~

[RCA7591]

Hi Crystal,

Here are some potential resources (you may need to drive a considerable distance to find a physician specializing in dysautonomia). There are a few in Maryland. The better physicians are located at major medical centers (Mayo, Cleveland Clinic, UPMC).

Dr. Ramesh K. Khurana
Hawthorne Office Park
10780 Hickory Ridge Road
Columbia, MD 21044
410-997-3113
POTS (OI, OT), NCS, PAF/Secondary Autonomic Failure, MSA, Anhidrosis, Hyperhidrosis
Autonomic Laboratory
Treats adults

Dr. Emmanuel Nsah
Peninsula Regional Medical Center
400 Eastern Shore Drive
Salisbury, MD 21804
410-749-8906
POTS, NCS, PAF/Secondary Autonomic Failure
Will treat adolescents and older

David O. Martin, MD, MPH
Cleveland Clinic, 9500 Euclid Ave/F15
Cleveland, OH 44195
216-445-4128

Dr. Martin is a cardiac electrophysiologist at a major tertiary care referral center and sees a number of patients with POTS/dysautonomia who have been previously misdiagnosed or non-diagnosed ("it's in your head").

Dr. Thomas Chelimsky
University Hospitals of Cleveland
11100 Euclid Ave.
Cleveland, OH 44106
216-844-3495
Autonomic Laboratory
Will treat children 12 years and older

Dr. Gerald E. Grossman
University Hospitals of Cleveland
Department of Neurology
11100 Euclid Avenue
Cleveland, OH 44106-5040
216-844-8925
Autonomic Laboratory

The Inderal is best suited when taken in combination with a long-acting Benzodiazepine (not Ativan). Inderal 10-20 mg BID and Klonopin 1 mg BID (or Valium 10 mg QID) would offer the best relief. The Ativan is better than nothing for the time being, provided it is dosed TID. See if the shrink will switch you to Klonopin 1 mg BID (I don't see why he wouldn't, as it is even the drug of choice for panic disorder).

Ideally, you DO need to be followed by a physician, as the dose of beta blocker is critical. You may require only 10 mg BID, or you may require more (typical is 20 mg BID). Did the GP give any recommendation as how to take the Inderal? What dose did she prescribe?

I can only provide average doses for drugs, but as with any drug(s), they must be individualized for the particular patient. It is essential that an MD make adjustments as necessary with the dosing.

If I had to pick a doctor from the list above, it would be Dr. Martin at the Cleveland Clinic. If you do go to the Cleveland Clinic, be advised, you will undergo extensive work-up which may entail an EP study and tilt-table test.

Personally, I'd try to work with the shrink and GP first, as they may be able to come up with a regimen that works for you. You could also locate a Cardiology firm in your local area, and see if any of the cardiologists in that group are familar with Dysautonomia.

-Ryan

[DragonTU84]

Hello again Ryan. Thank you for the names and information. I made an appointment with the doctor closest to me (in Columbia). He sounded really good, and has even made some appearances in other states to speak about Autonomic Dysfunction and its connection with Panic Attacks/Disorder. There are some articles that he has written about it, and I am trying to find copies of them online.

Unfortunately I cannot get in to see him until August 28th. :( So for now I am stuck with the "shrink" (lol) and my GPs.

Also, I was wondering...but if I DO decide to try to go and see the doc. at the Cleveland Clinic, would I be able to get in sooner or do you think it would be about the same time frame (end of August about)??? For me, the sooner the better, and for the doc. here it seems impossible to get in any sooner...:( EVERYBODY goes to see him since he is the best and only doc. who specializes in Dysautonomia in MD. :(

My GP went ahead and prescribed me Inderal, yet prescribed a higher dosage of 40 mg BID, since I am taking 50 mg daily of the Toprol XL now, and she thought it would be closer to what the dosage of the Toprol was.

Is that dosage correct, and should I go ahead and switch over?? Or do you think taking Inderal 20 mg BID would be about equivalent to the 50 MG Toprol XL once daily??

She (my GP) thought taking 20 MG of Inderal BID would still be cutting it short, and wanted to stay close to the amount I was on with the Toprol.

So what do you think of that??? I am sort of nervous just switching from one drug to another, and I am uncertain about the dosage amount (if 40 MG BID is too much or should I try 20 MG BID)? Also, how exactly do you go about switching from ONE MED TO THE OTHER?? Can I just STOP taking the Toprol XL and start on the Inderal, and if so, WHEN (do I take 50 MG tonight for instance then start on the 40 mg tablets tomorrow morning or tomorrow night??) Or is there any "weening" off of the Toprol while I introduce the Inderal into my system??? I am just so nervous...I don't want to f*** something up even more and cause my ANS to REALLY go out of wack, especially with how sensitive it is right now!!! Oh, and just so ya know....She is the SAME doctor who told me to quit Zoloft cold turkey, and the Zoloft alone caused mayham enough for my poor ANS, but not as much as quiting it cold turkey did!! O-O

Please get back to me ASAP when possible Ryan! Again, thanx for all of your help!!!

~Crystal~

[RCA7591]

Hi Crystal,

Good to hear that you have scheduled an appointment! Soon, you will get some definitive answers about your condition. August 28th is not unreasonable (although it may seem like a lifetime). The Cleveland Clinic wouldn't be any different. You may want to call back and ask about cancellations (if there is a cancellation, you may ask to be moved ahead if possible).
Sounds like you picked a good doctor, IMHO.

40 mg BID of Inderal is close to 50 mg (actually 47.5mg) of Toprol-XL (the Toprol is time-released every 12 hours at a rate of 47.5 mg). I would make a direct cross-over to the Inderal and see if the symptoms improve. I would not be hesitant to try the Inderal (nothing horrible will happen). Take the Inderal every 12 hours.

IF YOUR PULSE exceeds 100 bpm (doubtful) while taking the Inderal after three days, have the GP up the dosage slightly. At any rate, you need to lose the Toprol, because it is not acting on the ANS (only the myocardium), therfore, it doesn't have the full blockade benefit that Inderal does.

-Ryan

[DragonTU84]

WOOO HOOO!!! My appointment got moved up to MONDAY!! THIS MONDAY, that's right!!! I am SOOO excited!! I finally wanna get properly diagnosed, and it seems like God is showing me the light!!! I am SOOOO happy!!! You have no idea!! Thanks for ALL of your help Ryan!!! Thank you!!!

Let's just hope your intuition was right and I do have Dysautonomia so I can finally get properly treated for it!! WOO HOOO!!! :D I just FINALLY want to get a CORRECT AND RIGHT diagnosis!! Finally.....It is like a relief to my body and soul!! I will be celebrating all weekend up until Monday, that's for sure!!! XD

~Crystal

[RCA7591]

Hi Crystal,

I'm so happy for you! And I am certain that you will receive definitive answers soon.

Please let me know how your appointment goes on Monday.

You may as well start a new thread, as this one is pretty much buried into page 3.

Best to you,

Ryan