Help!!: POTS?/Adrenal Fatigue?/Other?? (symptoms, dizziness, itchy, ears)

[carribeanblue]

EnjoyEP, are you still there? How are you? Any progress? I read your posting with my jaw on the floor. Wow. Same symptoms. A little over two years ago I weighed 112 and exercised daily; now I'm 130 and I hate getting out of bed. I also seem to have the "twist" that you do: 1) sleeping too much, especially late into the morning, seems to make for worse days (even though all I feel like doing is lying down, rest doesn't help; and 2) any exercise. Even loading laundry into the washer/dryer is a challenge--heck, even moving around the kitchen unloading the dishwasher makes me woozy and off balance--and instantly exacerbates symptoms: head pressure, fatigue, dizziness (NOT vertigo, but a severe balance problem), wooziness, brain fog, wierd eye symptoms (like my glasses are on crooked). It's 24/7, although some days are worse, some better, and it's better when sitting than standing, and better when lying down than sitting. It seems to slowly get worse/better over several weeks, so I can't pinpoint exactly what causes those slow improvements/declines, although I've kept a log for years. I have low blood pressure and, according to my naturopath MD (yep, horrendously expensive) have adrenal fatigue (low cortisol levels per saliva test) and low thyroid (my primary care "traditional" doc doesn't agree with either of these). I have been on adrenal supplements for a couple of years now. I got Dr. Wilson's book "Adrenal Fatigue" which describes everything I'm going through; unfortunately if it is adrenal fatigue there isn't an easy road back, and I'm not entirely convinced it's all AF. (I weaned off Effexor in 2006, and my symptoms are suspiciously similar to what I felt when I missed a dose of Effexor, but a brief experiment with taking an Effexor, and trying Fluoxetine for 2 weeks, didn't improve matters.) I've had MRIs and EEGs and blood work (and then some) and cat scans and gallbladder tests (I had a doc who thought it was reflux-related reflux into the ear canal), every allergy test out there (including some that indicated I am "sensitive" to all foods except animal protein and dairy. Which may explain why I can't find a diet that I can eat continuously without getting sick; I keep having to switch to different foods. Low-carb knocked me flat). I've been taking supplements appropriate for adrenal fatigue for years.
And here I am, over two years later, 20 lbs heavier, all my great muscle tone and energy gone. Functioning? Sure, as long as no one at work catches me sneaking into empty conference rooms to lie down, and they continue to put up with my reduced productivity, and if I give up on ever getting the $800 worth of dance classes I signed up for right before this hit, and ignore the skiing equipment and the roller blades I bought before this happened (I learned to do both in 2005, this hit in 2006), and resign myself to needing to sit down all the time, no matter where I am. I had a neurologist, after a lot of negative tests, point out to me that I am "functioning", implying I should go home and live my life with whatever is left of it. Functioning? Sure. The man had no clue. I feel like I am a shell of my former self.
I don't really understand what POTs is (nor Myalgic Encephalomyelitis, which I've wondered about). I do have lowish blood pressure (runs around 95-100/60-70), which is a sign of adrenal fatigue. I do feel bad when I sit up/stand up, but it's not a blackout feeling. (I had that briefly in college when I was crash dieting). It's more an increased pressure in the head and a weak feeling. (Pulse went only from 75-80 lying down to 95 standing up.)
I am so tired of all this. Does anyone out there with symptoms like this EVER get better? Does anyone ever really figure it out?

[gillyann]

I am writing this on behalf of my mother Gillyann who is too sick to do it herself.She has pots syndrome and has been bedridden for 5 years which has only just come to light that her having low blood volume could be the main cause?She has low plasma in which she takes fludrocortisone 0,2mg and this week she will be recieving a drug called Erythropoeitin 10,000n units for 8 weeks in the hopes to raise her red blood cells.She suffers from a tight chest,breathlessness,low blood pressure and bad pooling in her stomach and legs.She has no quality of life at all and has to just lie down 24/7!Is there anyone else in the same position or taken these medications before?

[gillyann]

I am writing this on behalf of my mum Gillyann,who has pots syndrome and has been bedridden for 5 years.It came to light that she has low blood volume and this is a main reason why she is bedridden and has no quality of life.She is taking fludrocortisone to increase her plasma and this week she is starting on A drug called Erythropoeitin,10,000 units which is injected into her stomach in the hopes to increase her red blood cells.She suffers from a tight chest,low blood pressure,breathlessness,bad pooling of the stomach and legs and has to lay down 24/7!Is there anyone else in the same position or taking these medications?

[kinjul]

Have you been tested for Celiac Disease? Many doctors do not know to test for it and it can be the cause of unexplained health problems. For more information, please visit my blog where you will find lots of helpful links. If it is Celiac Disease, the good news is that your health will greatly improve by eating 100% gluten free, but don't try this until you have been tested. I suffered for 5 years with a variety of unexplained symptoms before I was finally diagnosed.
Gluten Free Optimist

[mfinn]

dear, ablimani

I have been having a crazy year and its all come down to the test I took today. The tilt table test. I have not recieved the offical word from the doctor, but the tec showed me the numbers from the tests. It was a very unconfortable test. my heart rate was in the 80's laying down and then shot up to 130-140 on the tilt position the entire time. My hands tingled, I had problems catching my breathe, I had a headache, I was dizzy and perspired. My blood pressure stayed about 115 over 60 then would drop as low as 80 over 40. My heart doc thinks I have pots. It has taken over a year to get here though.

It started when I wanted to loose weight, I exercised and exercised for 6mths and could not seem to progress. I would get light headed and dizzy and the little dots would come into my eyes and I thought I would pass out for sure. My husband had me try all kinds of things, raise my hands over my head, thinking maybe I was not breathing right. Then he had me try chewing gum when I would jog. sounds crazy I know....

I gave that up and tried the eliptical thats when I realized that my heart was in the 200's when I felt that dizzy feeling when I jogged.

One day I felt like that all day, I went to urgent care and my heart was 170. I was refered to a heart doc. He ran an echocardiogram, the 3 week push button monitor, the 24 hour monitor. He put me on meds that made my syptoms worse. At one point my heart was at 180 and I had to go back to the hospital, I could not catch my breathe, it was like I could not get off tredmill. They stopped my heart in the hospital twice and it did not change, finally 3 hours later with lots of meds, oxygen and fluids ect it calmed down. That heart doc refered me to a rythem specialist because he could only think of putting a pace maker in to stop the problem. So I saw the specialist, he was not all there, he ran the same wrong test twice and wanted me to take the right one the 3rd time. I finally started making calls and thats when I found my current heart doc. He sent me to a neurlogist and they ran the test today. I really hope I get results soon. Not that it will change much, except knowing is half the battle. From reading symtoms, I have about 80% of them. from cold hands feet and nose, infact I had no clue my husband and I joke saying I am just weird! Other symtoms, like my heart racing all the time, and being soo tired and sick to my stomach. I don't want to bore anyone with my list of symptoms. Anyhow, if there is any kind of support group, or something, please let me know. just hearing someone is struggling, I know I am not alone...

[mfinn]

carribianblue,

I am sad to say, not likely. You need to learn your triggers. Get lots of sleep, drink lots of water and sounds strange, go for walks, light exercise.

I have been battling symptoms for over a year now. my heart on average when standing is 120-130 and my blood pressure is really low like 84 over 50. I get lots of headaches and am really tired all the time. my syptoms go on and on. I have 2 very young children that need their mommy. They help me through the day emotionally, when really, they make my day that much harder physically. They help me see that there is more to life than my own health problems. Find somthing, that you find joy in. Maybe, you need to change your life style to do that. Me, I loved hiking and rock climbing, thats not an option anymore, so, I found somthing else to enjoy. Embrase the life that you have and make the most of it now, for life is truly tooo short....

[mfinn]

Originally Posted by ABLIMANI

Hello!

My name is Abbie and I was recently diagnosed with Dysautonomia..with
neuro-cardiogenic syncope. On June 5, 2007 as I was working, I suddenly
became lightheaded and dizzy, and before I knew it, I fainted. My Bp
was 170/94, and my heartrate was 92. After endless visits to the ER,
and two hospitalizations (one episode causing me to have a seizure), I
was told I was faking the episodes and am just looking for attention. I was even told that I made myself have a psychological "pseudoseizure" and
had a psychiatrist see me for my hysteria. The psychiatrist told me
not to waste my time having a tilt table test because he could gurantee
me that it would be "99.9%" negative and that I would just be wasting my
time. Disregarding his opinion, I had the tilt table being that it would be
the last test left to do after months and months of extensive workups.
During my tilt table, my Bp dropped (unmeausrable at the time) and my heart
rate jumped to 120 or so..my cardiologist said I had neuro-cardiogenic syncope once I passed out. After reading up and researching Dysautonomia
it is quite comforting knowing that my symptoms are pin pointed to
this condition. I have also read up on POTS and feel that perhaps my doctor has misdiagnosed me AGAIN. I think I have POTS and not necessarily neuro cardiogenic syncope. I have been measuring my Bp and heartrate on my monitor, and it seems as though everytime I rise/stand, my heartrate jumps to 110 or even as high as 142. I am tired alllll the time and can barely walk
up my stairs..I feel diabled. I tried to explain this to my doctor and he
thought of doing a stress test. I don't think that was the answer..I think
he just needed to know that my symptoms were probably related to POTS.
I am looking for a specialist but don't know where to go. I live in NJ, so
NY would be the closest to me. Does anyone know of a great doctor in
NY?
Thank you so much for listening to my story.
have been diagnosed with Dysautonomia. The more I read, and the more I
research, I am convinced

ablimani,

I have been having a crazy year and its all come down to the test I took today. The tilt table test. I have not recieved the offical word from the doctor, but the tec showed me the numbers from the tests. It was a very unconfortable test. my heart rate was in the 80's laying down and then shot up to 130-140 on the tilt position the entire time. My hands tingled, I had problems catching my breathe, I had a headache, I was dizzy and perspired. My blood pressure stayed about 115 over 60 then would drop as low as 80 over 40. My heart doc thinks I have pots. It has taken over a year to get here though.

It started when I wanted to loose weight, I exercised and exercised for 6mths and could not seem to progress. I would get light headed and dizzy and the little dots would come into my eyes and I thought I would pass out for sure. My husband had me try all kinds of things, raise my hands over my head, thinking maybe I was not breathing right. Then he had me try chewing gum when I would jog. sounds crazy I know....

I gave that up and tried the eliptical thats when I realized that my heart was in the 200's on an average work out. I would get dizzy and feel real sick to my stomach and would get these black dots in my eyes.

I started feeling that way alot even when I did not work out. One day it was bad enough that I went to urgent care and my heart was 170. I was refered to a heart doc. He ran an echocardiogram, the 3 week push button monitor, the 24 hour monitor.Blood work testing everything. He put me on meds that made my syptoms worse. At one point my heart was at 180 and I had to go back to the hospital, I could not catch my breathe, it was like I could not get off tredmill. They stopped my heart in the hospital twice and it did not change, finally 3 hours later with lots of meds, oxygen and fluids ect it calmed down. That heart doc refered me to a rythem specialist because he could only think of putting a pace maker in to stop the problem. So I saw the specialist, he was not all there, he ran the same wrong test twice and wanted me to take the right one the 3rd time.

I finally started making calls and thats when I found my current heart doc. He sent me to a neurlogist and they ran the test today. I really hope I get results soon. Not that it will change much, except knowing is half the battle. From reading symtoms, I have about 80% of them. from cold hands feet and nose, infact I had no clue my husband and I joke saying I am just weird! Other symtoms, like my heart at 120-130 when I am up and moving around. Its about 80-90 when at rest. My blood pressure is all over the board. normal one minute low the next. low meaning 88 over 50, normal 120 over 60.I am soo tired and sick to my stomach. I get headaches and have on going constipation that no fiber or lack of has helped. I don't want to bore anyone with my list of symptoms. Anyhow, if there is any kind of support group, or something, please let me know. just knowing I am not alone... is half the battle

[calmseas]

albimani,

I read an excellent book recently by a Dr. Benjamin Natelson, "Your Symptoms are Real: What To Do When Your Doctor Says Nothing is Wrong." He has dedicated his practice and research to conditions such as CFS, fibromyalgia, etc. He also discusses POTS. I was struck by his knowledge and his compassion for those who suffer from all such conditions. It is a book well worth reading - I ordered mine from Amazon. It is validating to those who have these many symptoms and are told by so many that nothing is wrong or that it is a psychological issue. He also discusses various potential treatments, etc. Also, I have no idea if he is taking new patients currently, but you mention you are in NJ and he is at New Jersey Medical School. If he is not taking new patients, they might at least be able to refer you to someone who would have similar understanding of these conditions. I would definitely pursue that possibility.

If you don't already know about them, there are a couple of forums for patients with dysautonomia that you might find helpful for support. Both of these include a forum as well as a lot of information, links, etc.

Dysautonomia Information Network Forums (Powered by Invision Power Board)

NDRF Forums and Chat - Powered by Eve For Enterprise

I am sorry for the problems you are having, and as a mom of two kids with POTS, I understand all too well how difficult and frustrating the journey can be. We have found no one thing that is a cure-all but we have found various things that are of help - it's like pieces of a puzzle - if you put enough small pieces together you can get at least some relief. Every patient is different and what works for one doesn't necessarily work for another one. My kids are a perfect example of that. It is a lot of trial and error, but any help with any of the symptoms is always welcome! My thoughts are with you.

[ConsumersWhoKnow]

I'm trying Wonder Lab's sublingual Vitamin B6, B12 & Folic Acid pills that dissolve under your tongue to combat my POTS and CFS. I ordered them through [url=http://www.amazon.com]Amazon.com: Online Shopping for Electronics, Apparel, Computers, Books, DVDs & more[/url] If U go 2 the "Wonderlab" website, it will tell U all of the symptoms of B deficiency and all of the things it helps 2 remedy. I've read that Americans R suffering from a Vitamin B and D deficiency causing a lot of these health issues (i.e., overweight, depression, etc.)

[daviewatts]

If you are still sick, check out Chronic Fatigue Syndrome, and XMRV