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Old 08-21-2007, 12:59 PM
 
Location: Metro Milwaukee, WI
3,185 posts, read 11,052,176 times
Reputation: 2103

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Any advice / help would be appreciated -

I am a 30 year old male in otherwise good physical health.

At about age 25, I started a running regiment that went overboard. Vigorous running with no rest days / a lack of recovery, combined with essentially a starvation diet. Did that for two years or so - very foolish and dumb.

Around that time, I came down with very negative symptoms. Extreme daily fatigue. Dizziness. An "itchy" or "tingling" (feels like cotton is rubbing against me) feeling especially in the head, but also in other parts of the body. "Foggy" head. Pressure in head. Weak. Shaky. Bizarre feeling in the corners of the eyes. Nauceous / dizzy quite easily with movement. A feeling that I need to vigorously shake my head to "losen" the feeling up. My skin on my head almost feels like it isn't getting enough blood so I rub it to try to get the itching / tingling / cotton-like feeling out. Not fun. (I actually sometimes have my wife sit on my head with full weight - seriously - this seems to give the symptoms some relief. Sneezing also...as weird as it seems...seems to help, albeit only for a few seconds).

I ended up totally rectifying my habits. Started to eat very well and very often and very healthfully. Still, things didn't significantly improve.

2 years ago I gave up running to alleviate my symptoms...they were really negatively impacting my every day life.

Haven't run in 2+ years. Have ate like a champ for 3.5+ years again. Have taken Vitamins (especially B and C) as supplements.

Still...although my symptoms got to the point where I could live with them and minimize them somewhat, I have fully plateaued for the past 1.5 years and am NOT getting better. After a few months now of having lesser symptoms again, this past 2-week period has seen them roaring back (no noticable change in lifestyle, etc.) and it is driving me NUTS.

While running poorly put me in this hole, next to my wife / kids and my faith, running and other sports (eg: basketball) are my love...I cannot do them as long as I have these crummy symptoms. Also, things like work and fatherhood are negatively impacted with these crummy symptoms.

Now, it seems like the things that really exasperate my symptoms are: a) if I run or do any hard cardiovascular activities (which I pretty much avoid now)...I will feel miserable for the next 48 hours or so even if I do a 15-minute ultra-slow job. Also...b) If I wake up from sleep, turn over and go back to sleep - eg: "sleep in".

Both of those especially cause problems.

However, in another weird twist to it, if I sleep only 6 or 6.5 hours - wake up right with my alarm - generally 80% of the time the symptoms are minimal or nothing during the day (unless, again, I would attempt any of those cardio-type activities).

I believe what I have is POTS [Postural orthostatic tachycardia syndrome]...that is what an MD recently diagnosed me with after years of negative tests, bloodwork, MD appt.'s, etc. (that all said I was healthy). My pulse rate zooms up when I go from a lying state to a sitting state, and again from sitting to standing. Thus, he thinks I have POTS and he put me on Midrodine (which doesn't much help).

With the itchiness, cotton-esque feeling and the sluggishness, brain fog, lethargy, etc., I have somewhat felt like I have adrenal fatigue or a thyroid issue. However, all thyroid tests have checked out, and most MD's say adrenal fatigue isn't even real (and my cortisol tests all check out).

Sometimes I think it may be a sinus issue, however, that doesn't explain how it'll subside quite a bit for a week or two, and then resurface, or why it is worse after cardio activity.

Does anyone have any thoughts on this? Anyone with experiences similar?

I am running out of hope to ever feel normal again. This really stinks so badly!!
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Old 10-08-2007, 10:02 AM
 
2 posts, read 33,855 times
Reputation: 12
In terms of testing your thyroid, did your doctor simply check your TSH or did he/she also check your free T3 and free T4 levels. Checking TSH only confirms (or rules out) primary hypo/hyperthyroidism, but a thyroid disorder can be caused by secondary--or even tertiary--sources. Without free T3 and free T4 measurements, you haven't got the information you really need. Some doctors want to stop at TSH unless you push for tests beyond that--and with your symptoms, you're well within your rights to do. If your GP resists, ask for a referral to an endocrinologist (and consider finding a new GP as well!)

One other suggestion...if you haven't already done so (and I doubt your doctor has had the insight to request this), have your vitamin B12 level checked. B12 deficiency can cause any number of disturbing (and potentially serious) symptoms, including the fatigue, dizziness, and itchy/tingling feelings that you're currently experiencing. People who have this problem due to an absorption problem (as opposed to simply having a diet that's lacking in B12) won't benefit from multivitamins containing the B-complex. To sum it up, if a person is 1.) deficient and 2.) the deficiency is due to malabsorption or a similar breakdown in B12's metabolism, that person needs injections and/or oral (or sublingula lozenge) therapy--possibly lifelong. It can take a long time--decades, sometimes--for B12 deficiency to develop. Don't let your doctor tell you that you can't be B12 deficient because you're not anemic; symptoms (neurological symptoms especially) often show up a long time before the deficiency manifests itself as a blood disorder.

With that said, having a serum (blood) level test for B12 isn't enough, since here in the US our low end of normal (typically 200 pg/mL) is set way too low and many people experience problems in the "low-normal" (i.e., below 350, or even 400) range. Insist on a uMMA (urinary methylmalonic acid) test as well as the serum B12...uMMA is the gold standard for confirming B12 defiency. If your doctor doesn't know what this is, there's plenty of medical literature you can point to. You might want to check out Norman Clinical Laboratory, Inc. (broken link) for info on both the condition and the test.
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Old 10-08-2007, 01:34 PM
 
Location: Sunny Naples Florida :)
1,452 posts, read 1,753,633 times
Reputation: 513
It sounds to me like you have what I have. . Here's my story...

3 years ago I went to Mexico for my honeymoon, 1 day I was there i was sick, throwing up etc. I never drank the water or ate any food other than what was on the cruise ship. 3 Weeks later I was sick.. VERY SICK. I didnt get out of bed for 3 months sick. I was dizzy all the time, heart racing bad, shakiness, foggy head, feeling "out of it" this is called depersonalization, you feel as if you are not in your body almost and you get like a floaty feeling, head pressure, visual disturbances including spots, sparkles, sudden blurry vision etc. This all happen around 04. I was not properly diagnosed till 06. I had surgeries, biopsies, I was told I needed pacemakers, I was put on heart failure medication. I've had adrenal tests, cortisol tests, cancer tests, mri's mra, eeg, ekgs, spinal taps, diabetic blood tests, been tested for exotic diseases you name it I've had it.. Let me put it this way. I have health insurance. I've never had a lapse or a time when I didnt' in the whole time I've been sick.. Even WITH health insurance, I've aquired almost $100,000 in medical bills for procedures to figure out what I've had . My worst symptom is dizziness. I've had it 24/7 for 3 years.. I've been to physical therapy 3 times to no avail.. All at the age of 21....

You know its funny that you mention not feeling well the past 2 weeks or so.. I have two friends who I chat with who also have POTS and with myself included for the past 2 weeks our symptoms have been out of control terrible. We're all thinking its the change of season hitting us.. They say that people with POTS cannot tolerate season changes too well.. I'm starting to believe its true

In dec of 06 I went to an electrocardiologist. I told them I felt like fainting sometimes when I stood up, my heart was racing just walkin to the bathroom or anywhere and the list goes on. I was ordered to have a tilt table test.

On the table I was tilted and they read your b/p and heart rate. People with POTS have an opposite reaction than normal people. Your b/p will drop and your heart rate will go up... For me my b/p dropped to 59/32 (thats recovering, they to this day do not know how low it actually got) and my heart rate went to 150... That is a positive result meaning I have POTS.. A tilt table is the only way to positivley diagnose POTS. I also have Dysautonomia. Pots is a form of Dysautonomia.. So if you have Pots you have Dyautonomia..

Both of these syndromes are a glitch in your autonomic system. This system controls the functions of your body you cannot, eg heart rate, blood pressure, lungs etc. When this is messed up it gives the sensation and apparent malfunction of the organs it regulates.. Notice apparent.. It does not actually cause failure just seems like it does.. Doctors are unaware why this happens, hence its a syndrome..

POTS/Dysautonomia can be brought on by many many things, Stress, virus's which they think is how I got it, extreame physical activity, child birth.. The list goes on..

The only way to describe it to someone who doesn't have it is to ask them to think about how it would feel to have the flu for 4 years straight, When yourw achy sick, fatigued, lethargic, and just feeling terrible all the time. Thats how people with POTS feel. All day every day and all night.

Here's the good news.. IF infact you do have POTS it will not kill you. The bad news is there is no cure, and it does not go away. I have now been sick for almost 4 years. Here's the kicker for all of us with it though, as crappy as we feel and how sick we are the key to re regulating your system so its bearable is exercise. Imagine that.. I lost my job at the state attorneys office in 04 and have not worked since. This is a life changing illness. It can come and go in some or for others they have the life equivalency to someone living with congestive heart failure. And VERY RARE. I'm not trying to scare you... Its like having a cold, there are different degree's of what you can have to a cold. Head cold, chest cold, body cold.. and you feel different with all..

The odds that someone on this board actually knows what this is is slim.. I just posted a post on dysautonomia a few down from you and no one posted. most doctors have never heard of it.. let me direct you to a site.. see if this sounds like you

If you suspect you do , you need to go to a neruologist, before you do you need to find out if the doctor is aware of Dysautonomia and if they can help you..Most treatment consist of intake of salt to keep up blood volume. Your body is in a chronic state of dehydration, you'll need to drink gatorade and water constantly all day.. Some people like myself wear compression stockings to keep up blood pressure and I take salt tabs 10 a day.. There are also medications to help you. It takes the average person 3-5 years to be properly diagnosed with POTS/Dysauto becasue it is so rare..

Look here..

POTS Place (broken link)


PM me if you like , I'm interested to talk to you and help you out, there are support groups and forums for this syndrome, if that is what you have.. There are currently a few foundations that are trying to find a cure for this syndrome , more and more people are coming down with it..

Last edited by Tarastomsgirl; 10-08-2007 at 01:59 PM..
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Old 10-10-2007, 11:59 AM
 
Location: Metro Milwaukee, WI
3,185 posts, read 11,052,176 times
Reputation: 2103
Quote:
Originally Posted by superfrog View Post
In terms of testing your thyroid, did your doctor simply check your TSH or did he/she also check your free T3 and free T4 levels. Checking TSH only confirms (or rules out) primary hypo/hyperthyroidism, but a thyroid disorder can be caused by secondary--or even tertiary--sources. Without free T3 and free T4 measurements, you haven't got the information you really need. Some doctors want to stop at TSH unless you push for tests beyond that--and with your symptoms, you're well within your rights to do. If your GP resists, ask for a referral to an endocrinologist (and consider finding a new GP as well!)

One other suggestion...if you haven't already done so (and I doubt your doctor has had the insight to request this), have your vitamin B12 level checked. B12 deficiency can cause any number of disturbing (and potentially serious) symptoms, including the fatigue, dizziness, and itchy/tingling feelings that you're currently experiencing. People who have this problem due to an absorption problem (as opposed to simply having a diet that's lacking in B12) won't benefit from multivitamins containing the B-complex. To sum it up, if a person is 1.) deficient and 2.) the deficiency is due to malabsorption or a similar breakdown in B12's metabolism, that person needs injections and/or oral (or sublingula lozenge) therapy--possibly lifelong. It can take a long time--decades, sometimes--for B12 deficiency to develop. Don't let your doctor tell you that you can't be B12 deficient because you're not anemic; symptoms (neurological symptoms especially) often show up a long time before the deficiency manifests itself as a blood disorder.

With that said, having a serum (blood) level test for B12 isn't enough, since here in the US our low end of normal (typically 200 pg/mL) is set way too low and many people experience problems in the "low-normal" (i.e., below 350, or even 400) range. Insist on a uMMA (urinary methylmalonic acid) test as well as the serum B12...uMMA is the gold standard for confirming B12 defiency. If your doctor doesn't know what this is, there's plenty of medical literature you can point to. You might want to check out Norman Clinical Laboratory, Inc. for info on both the condition and the test.
Awesome information, superfrog. Thanks so very much. I have done the T3 and T4 measurements for thyroid, so as much as it seems to fit hypothyroidism description perfectly, I guess I probably need to rule that out. However, I have never had the B12 deficiency checked and what you say is very interesting and I think it is something I should pursue fairly quickly here. That would seem to be right up the ally for me for something to have checked.

Thanks so very much...very useful and helpful post.
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Old 10-10-2007, 12:35 PM
 
Location: Metro Milwaukee, WI
3,185 posts, read 11,052,176 times
Reputation: 2103
Tarastomsgirl -

Thank you so very, very much for taking the time to respond. I cannot tell you how refreshing and helpful it is to read of someone else who actually kind of understands...so few people actually do.

I actually have been to www.potsplace.com and have tried to register for the forum there, but for some reason, it doesn't allow me in. Maybe I will try again. I believe that POTS is the most likely cause of my problem - after the Dr. diagnosed me with it, it all seemed to make sense.

Here are some thoughts I have:

Quote:
Originally Posted by Tarastomsgirl View Post
3 Weeks later I was sick.. VERY SICK. I didnt get out of bed for 3 months sick. I was dizzy all the time, heart racing bad, shakiness, foggy head, feeling "out of it" this is called depersonalization, you feel as if you are not in your body almost and you get like a floaty feeling, head pressure, visual disturbances including spots, sparkles, sudden blurry vision etc. This all happen around 04. I was not properly diagnosed till 06.
Wow, it sounds like you got it worse than even I did. I was never quite this bad, although actually, I was pretty bad symptoms-wise for quite a while when I came down with it. My problem is that I was equally for 2 years or so very hard on my body in terms of overtraining (running) and near-starvation like nutrition, so I am not sure where the POTS was and where the foolish beating on my body was.

I really, really, really, really (I can't say really enough) regret the harsh things I did to my body with that period of running. I really feel like I never would have contracted this horrid problem if it wasn't for that period. Unlike you, where it sounds like you really just kind of got really unlucky, which really stinks. I wouldn't wish these types of symptoms on anyone.

Quote:
Originally Posted by Tarastomsgirl View Post
I had surgeries, biopsies, I was told I needed pacemakers, I was put on heart failure medication. I've had adrenal tests, cortisol tests, cancer tests, mri's mra, eeg, ekgs, spinal taps, diabetic blood tests, been tested for exotic diseases you name it I've had it.. Let me put it this way. I have health insurance. I've never had a lapse or a time when I didnt' in the whole time I've been sick.. Even WITH health insurance, I've aquired almost $100,000 in medical bills for procedures to figure out what I've had . My worst symptom is dizziness. I've had it 24/7 for 3 years.. I've been to physical therapy 3 times to no avail.. All at the age of 21....
Unbelievable. And you know what...I totally can relate and sympathize. You actually have gone through more medicinally than I - much more - but in many ways I have a similar history. Just test after test after test, some meds, numerous doctors' appointments, dollars spent like crazy, natural supplements tried like crazy, the list goes on. I cannot describe how frustrating it gets.

Quote:
Originally Posted by Tarastomsgirl View Post
You know its funny that you mention not feeling well the past 2 weeks or so..
For me, I believe it largely has been in starting a new job, relocating. I haven't felt "stressed", but stress seems to be a huge-time trigger for me with my symptoms, stress of any kind (even very mild stress that I don't feel "stressed" from). For instance, on the weekends currently, I feel almost perfect - like my old self. But during the workweek, even though my routine isn't greatly different or anything, and I don't feel any stress really, - bam - there are my symptoms. Of course, if I tell folks this, they think, "yep, there it is, it is all in the guy's head; he just needs Prozac and a counselor and he'll be fine" when it is just so not true, if they only knew. I am pretty much the anti-hypochondriac.


Quote:
Originally Posted by Tarastomsgirl View Post
I was ordered to have a tilt table test.

On the table I was tilted and they read your b/p and heart rate. People with POTS have an opposite reaction than normal people. Your b/p will drop and your heart rate will go up...
I was scheduled to have a tilt table back in June but the doctor had to cancel and I have never had a chance to have mine. Instead, I was diagnosed through some orthostatic tachycardia tests given in the doctors' offices, and they wanted to follow up with tilt table, but it hasn't happened yet. I need to keep after them to have it happen, but the cardiologist who diagnosed me made a good point, stating that it was clear from his office test and my symptoms that I had this and the tilt wouldn't change much in terms of treatment, etc.

Quote:
Originally Posted by Tarastomsgirl View Post
POTS/Dysautonomia can be brought on by many many things, Stress, virus's which they think is how I got it, extreame physical activity, child birth.. The list goes on..
Yep, I am guessing my start was through my extreme physical activity combined with the stress I was putting my body through. Also, a few years earlier I had a huge case of mono which I am sure virus-wise didn't help things either.

Quote:
Originally Posted by Tarastomsgirl View Post
The only way to describe it to someone who doesn't have it is to ask them to think about how it would feel to have the flu for 4 years straight, When yourw achy sick, fatigued, lethargic, and just feeling terrible all the time. Thats how people with POTS feel. All day every day and all night.
It is too funny, you sound just like me. I have always said "fever" instead of "flu", but flu surely works too. Fortunately, I guess I am somewhat lucky (even though I don't feel that way) as I don't have my symptoms all the time. They have gotten better somewhat over the past 3 or 4 years - even though they have plautaued now for the most part - and I do get breaks where I don't feel them much. Low stress times, as few and far in between as they are, like weekends, really aid my symptoms. And any time now I am lying down I feel no symptoms (that used to not be the case, I used to feel pretty crummy lying down too).

However, I think my real frustration is now this. When I felt really insanely bad, I just battled to survive the day and if I felt relief, it was a cause for celebration.

Now, so often I feel either pretty much like my old self (low stress times like weekends) or at least semi-OK (off and on during periods of "regular life") where I don't feel well, but I don't feel awful either, that I just feel like, darnit all, I should be able to feel well like this all the time again. I should be able to do the thing I love again - run, or play basketball or bike, etc. - and should just be able to feel like this all the time. So when the symptoms are bad and I feel miserable physically, psychologically it is beyond demoralizing. It makes me wonder if I will ever feel fully healthy again. It makes me wonder if I will ever be able to do my loves of running / exercise-beyond-walks again. Because I am able to work, look fairly normal, live fairly normally, etc., people then do not understand or sympathize with my symptoms whatsoever. Friends ask me to play bball, etc., and it is annoying to tell them I can't. My body is willing. My symptoms are not.

Quote:
Originally Posted by Tarastomsgirl View Post
The bad news is there is no cure, and it does not go away.
Really?? Ever??? Wow, that makes life really feel pretty not-worth-living if this is with me forever. Ouch.

Quote:
Originally Posted by Tarastomsgirl View Post
Here's the kicker for all of us with it though, as crappy as we feel and how sick we are the key to re regulating your system so its bearable is exercise.
But my big problem is that exercise is one of the main triggers for my symptoms. I walk 5 miles per day for my exercise, but can't really do much else. I can rack up maybe a set of 20 situps, but if I try to do anything like jogging for 15 minutes, some pushups, etc., my symptoms are awful. How can you get to the point of exercising beyond walking?

Quote:
Originally Posted by Tarastomsgirl View Post
Most treatment consist of intake of salt to keep up blood volume. Your body is in a chronic state of dehydration, you'll need to drink gatorade and water constantly all day.. Some people like myself wear compression stockings to keep up blood pressure and I take salt tabs 10 a day.. There are also medications to help you.
Yeah, I try to really jack up my salt right now, especially when symptoms are there, and that seems to help.

But when I drink water in large quantities (like 64 or 72 ounces), it actually seems to make symptoms often worse! It seems to deplete my sodium levels really easily. I know hydration is important, but a) I cannot afford the calories to drink Gatorade, and b) water seems to make me seems worse!

Question: where do you get salt tabs? Who sells them? I cannot find them and I think they'd be helpful.

As for meds, at first I was on Midrodine as needed, but that doesn't seem very helpful. In fact, sometimes it seems like it hurts more than helps. The side effects (including tingling head) almost are as bad as the symptoms.

Now, I am on Toporol (spelling??) a type of beta blocker, which actually does seem to somewhat moderately help, although I don't know if I would say it is amazingly helpful. It does get my resting heart rate down into the 70s and seems to somewhat calm my automic nervous system, which I think is the biggest help.

Frankly, drinking alcohol amazingly seems to help my symptoms almost as much as anything (again, you tell people that and they think oh yeah, it is depression or something psychological when in fact, I actually prefer not drinking alcohol). My hypothesis is that it is a depressant, and the depressant actually helps calm the symtpoms? Does that make sense.

Anyway, I am really, really frustrated. I would really like to get more of your thoughts and advice and insights....they are very appreciated. You have no idea. I guess I am somewhat lucky as I am still able to work (although this greatly, GREATLY impacts how I work and sometimes I fear for my job on the bad stretches) and I live a relatively normal life - it seems like you may have it even harder, which I totally sympathize with. I just don't feel lucky, and I really, really hate these symptoms and would do anything to rid myself of them. Argh. Thanks so very, very much again.
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Old 10-10-2007, 02:56 PM
 
Location: Sunny Naples Florida :)
1,452 posts, read 1,753,633 times
Reputation: 513
Quote:
Originally Posted by EnjoyEP View Post
Tarastomsgirl -

Thank you so very, very much for taking the time to respond. I cannot tell you how refreshing and helpful it is to read of someone else who actually kind of understands...so few people actually do.

I actually have been to www.potsplace.com and have tried to register for the forum there, but for some reason, it doesn't allow me in. Maybe I will try again. I believe that POTS is the most likely cause of my problem - after the Dr. diagnosed me with it, it all seemed to make sense.

Here are some thoughts I have:



Wow, it sounds like you got it worse than even I did. I was never quite this bad, although actually, I was pretty bad symptoms-wise for quite a while when I came down with it. My problem is that I was equally for 2 years or so very hard on my body in terms of overtraining (running) and near-starvation like nutrition, so I am not sure where the POTS was and where the foolish beating on my body was.

I really, really, really, really (I can't say really enough) regret the harsh things I did to my body with that period of running. I really feel like I never would have contracted this horrid problem if it wasn't for that period. Unlike you, where it sounds like you really just kind of got really unlucky, which really stinks. I wouldn't wish these types of symptoms on anyone.



Unbelievable. And you know what...I totally can relate and sympathize. You actually have gone through more medicinally than I - much more - but in many ways I have a similar history. Just test after test after test, some meds, numerous doctors' appointments, dollars spent like crazy, natural supplements tried like crazy, the list goes on. I cannot describe how frustrating it gets.



For me, I believe it largely has been in starting a new job, relocating. I haven't felt "stressed", but stress seems to be a huge-time trigger for me with my symptoms, stress of any kind (even very mild stress that I don't feel "stressed" from). For instance, on the weekends currently, I feel almost perfect - like my old self. But during the workweek, even though my routine isn't greatly different or anything, and I don't feel any stress really, - bam - there are my symptoms. Of course, if I tell folks this, they think, "yep, there it is, it is all in the guy's head; he just needs Prozac and a counselor and he'll be fine" when it is just so not true, if they only knew. I am pretty much the anti-hypochondriac.




I was scheduled to have a tilt table back in June but the doctor had to cancel and I have never had a chance to have mine. Instead, I was diagnosed through some orthostatic tachycardia tests given in the doctors' offices, and they wanted to follow up with tilt table, but it hasn't happened yet. I need to keep after them to have it happen, but the cardiologist who diagnosed me made a good point, stating that it was clear from his office test and my symptoms that I had this and the tilt wouldn't change much in terms of treatment, etc.



Yep, I am guessing my start was through my extreme physical activity combined with the stress I was putting my body through. Also, a few years earlier I had a huge case of mono which I am sure virus-wise didn't help things either.



It is too funny, you sound just like me. I have always said "fever" instead of "flu", but flu surely works too. Fortunately, I guess I am somewhat lucky (even though I don't feel that way) as I don't have my symptoms all the time. They have gotten better somewhat over the past 3 or 4 years - even though they have plautaued now for the most part - and I do get breaks where I don't feel them much. Low stress times, as few and far in between as they are, like weekends, really aid my symptoms. And any time now I am lying down I feel no symptoms (that used to not be the case, I used to feel pretty crummy lying down too).

However, I think my real frustration is now this. When I felt really insanely bad, I just battled to survive the day and if I felt relief, it was a cause for celebration.

Now, so often I feel either pretty much like my old self (low stress times like weekends) or at least semi-OK (off and on during periods of "regular life") where I don't feel well, but I don't feel awful either, that I just feel like, darnit all, I should be able to feel well like this all the time again. I should be able to do the thing I love again - run, or play basketball or bike, etc. - and should just be able to feel like this all the time. So when the symptoms are bad and I feel miserable physically, psychologically it is beyond demoralizing. It makes me wonder if I will ever feel fully healthy again. It makes me wonder if I will ever be able to do my loves of running / exercise-beyond-walks again. Because I am able to work, look fairly normal, live fairly normally, etc., people then do not understand or sympathize with my symptoms whatsoever. Friends ask me to play bball, etc., and it is annoying to tell them I can't. My body is willing. My symptoms are not.



Really?? Ever??? Wow, that makes life really feel pretty not-worth-living if this is with me forever. Ouch.



But my big problem is that exercise is one of the main triggers for my symptoms. I walk 5 miles per day for my exercise, but can't really do much else. I can rack up maybe a set of 20 situps, but if I try to do anything like jogging for 15 minutes, some pushups, etc., my symptoms are awful. How can you get to the point of exercising beyond walking?



Yeah, I try to really jack up my salt right now, especially when symptoms are there, and that seems to help.

But when I drink water in large quantities (like 64 or 72 ounces), it actually seems to make symptoms often worse! It seems to deplete my sodium levels really easily. I know hydration is important, but a) I cannot afford the calories to drink Gatorade, and b) water seems to make me seems worse!

Question: where do you get salt tabs? Who sells them? I cannot find them and I think they'd be helpful.

As for meds, at first I was on Midrodine as needed, but that doesn't seem very helpful. In fact, sometimes it seems like it hurts more than helps. The side effects (including tingling head) almost are as bad as the symptoms.

Now, I am on Toporol (spelling??) a type of beta blocker, which actually does seem to somewhat moderately help, although I don't know if I would say it is amazingly helpful. It does get my resting heart rate down into the 70s and seems to somewhat calm my automic nervous system, which I think is the biggest help.

Frankly, drinking alcohol amazingly seems to help my symptoms almost as much as anything (again, you tell people that and they think oh yeah, it is depression or something psychological when in fact, I actually prefer not drinking alcohol). My hypothesis is that it is a depressant, and the depressant actually helps calm the symtpoms? Does that make sense.

Anyway, I am really, really frustrated. I would really like to get more of your thoughts and advice and insights....they are very appreciated. You have no idea. I guess I am somewhat lucky as I am still able to work (although this greatly, GREATLY impacts how I work and sometimes I fear for my job on the bad stretches) and I live a relatively normal life - it seems like you may have it even harder, which I totally sympathize with. I just don't feel lucky, and I really, really hate these symptoms and would do anything to rid myself of them. Argh. Thanks so very, very much again.



I am so glad I could help you clarify some things.. Don't regret what you did with your body, you didn't know.. If I had dime for all the things I regret phew.. no medical bills for me!!! I had a very severe case of POTS... My resting heart rate was in the 90's and they clocked me in as having a heart rate of 150 just sitting up once.. I was bedridden for almost 3 months. I lost 30lbs in 3 weeks , I had sores on my head, in my mouth.. My family literally thought I was going to die. I thought I was going to die.. Key is don't give up hope.. No there isn't a cure for it.. But that doesn't mean people have not see a complete loss of symptoms.. Keep at exercise, swimming is excelent.. It makes the legs strong. The stronger your legs , the better your bloodpressure will stay and not have it fall so much and make you feel very sick.. I understand the feeling of just trying to survive the day.. There are somedays when I cannot get out of bed.. I haven't worked in 3 years.. I watched my poor husband putting in 80 hours a week to keep us a float. We had to move out of state from Fla-NH away from family cause we couldnt' survive there on one income... Its been tough, but don't give up hope. We're not dying just feel like it.. In a way we're lucky, we are the people who appreciate life, and the simple things so much more.. For us going to a baseball game means the world cause its an accomplishment of that day that tomorrow we might not be able to do.. So as hard as you think it is , and as sucky as it is just remember that. For a long time I was why me, I didn't ask for this , this isn't the life I wanted.. I wanted to go to culinary school, raise a family, retire early.. Well for now none of those are being accomplished.. But I can be a chef at home to my husband and I can babysit and enjoy kids like that, and welll not working I've practically retired lol!! Look on the upside.. There are some people with this syndrome that are in wheelchairs or bedridden.. The worst cases cannot sit up without passing out.. THANK GOD we are not like that!!

Another thing, IT IS NOT IN YOU HEAD!!!!!!!!!!! DO NOT let anyone tell you different.. POTS/Dysautonomia is considered an "invisible illness" .. People will always say , well you don't look sick... Thats because unlike cancer which you see weight loss or hair loss we don't have that.. Its all internal... Don't let anyone convince you otherwise.. You know your body.. For years I fought with doctors, all I got was , your too young to be sick, you don't look sick.. I had a couple ask me to stop coming in..For a while I did think I was going crazy, I went to head doctors begging them to fix it.. I was put on xanax and zoloft and prozac.. Nothing helped. It just made me a drugged out zombie. I would call my doctors homes at 11 at night BEGGING them to admit me to the hospital I felt so sick, to find some cure.. I didnt' care if they told me I had AIDS literally as long as I had an answer. I KNEW something was wrong.. I was very sick... I saw over 30 doctors before someone did a tilt table.. The tilt table btw is very good to know just how low your b/p is dropping.. If its goint too low like me, they'll reccomend compression stockings.. THOSE HELP...I wear knee high and thigh highs and it makes a difference.

I know how you feel about the playing softball and your body wants to but your symptoms do not.. We all feel like that with POTS.. We all feel like we miss out on so much of life. Thats very normal.. US "POTSIES" as we call ourselves are famous for making plans and then having to break them.. DON'T stop making those plans.. It gives you something to look foward to , something to hope about and if you can't go then thats okay there is always a next time. Your friends just need to understand you're not the same person you were before. Explain to them whats going on.. I dunno if you have ever heard of the spoon theory.. but this will explain your life as you're living it now.. I sent this to my friends to understand what I go through every day..

The Spoon Theory Link (http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php - broken link)

Also if you want to see some faces of other people with it, who you will notice are mostly women, usually thats who this effects the most, they're not sure why.. and also you'll notice that people who have POTS usually have a variety of other syndromes, like myself I have the hole in my heart, mitral valve prolapse, tricuspid and pulmonic valve prolapse, neruocardiogenic syncope with vasodepressor response, dysautonomia and POTS... So phew thats a mouthful.. I'm the second person in the video btw.. Tara

DYSAUTONOMIA/POTS VIDEO LINK


Do not get discourage that there isn't a cure at this time.. There are more and more people becoming aware of this illness.There are foundations set up and people trying to get the word out.. I have a shirt I wear, I have the little ribbons magnets on my car that say Dysautonomia Awareness and people ask about it.. It was just in the news.. I actually talk to this girl in this news video, she has set up a foundation called Dreams for dysautonomia.. I dunno if you have myspace but if you do let me know and I'll direct you to a POTS site and a dysautonomia site on myspace, you can talk to many many people who have it.. here's the link to the news story about it.. also if you look on the videos below it the girl in the news cast also does a web blog about pots, i think it says POTS part 3 the informative part.. Just click on it and it should show a POTS part 1 in the same place you found the Part 3... Those are cool too.. Don't worry you're not alone, sometimes it just feels like we are


POTS IN THE NEWS LINK

The salt intake is good just make sure you check in with your doc periodically and have em check your levels to make sure you're not getting TOO much.. Its a vicious cycle,, with POTS your body is literally in a constant state of dehydration.. You need salt to raise your blood volume so you don't feel like crap, yet salt dehydrates you more, so you drink more, which washes out the salt you drank.. Sounds like a why bother then type of thing, but realize that your body is absorbing that salt differently than a normal person.. You're getting more salt absorbed than you think so your blood volume is raising.. Just drink as much water as you feel comfortable and stay hydrated.. Foods like garlic can make you feel bad, garlic lowers b/p so mimimize it as much as possible and only eat it on special occasions.. Sugar and alchohol (which you said doesn't effect you but really does because it makes you dehydrated so you might feel crappy for days or even weeks after so be careful) are bad.. Sugar can stimulate your adreniline and get your body working into overdrive. It'll jump start your system.. Take it in moderation.. As far as the salt tabs I was prescribed them but they said they sell them OTC at like a Walgreens type of store.. Just ask the pharmacy for sodium chloride tabs.. They're much easier than pouring salt on everything and can just be swallowed. When I feel extra crappy I suck on them cause it gets into my system and blood faster cause they don't have to be digested.. Just keep a bottle of water handy when you suck on them and swish your mouth with water every once in a while to get the tasted out and so you don't get salt burns and sores in your mouth..

Phew I think I covered mostly everything for now... Keep in touch with me... I'll send you my e-mail in a PM and you can talk to me like that if you'd like.. Its always nice to meet another Potsie and share good and bad days.. We get em both.. I've gone 3 months of feeling great and these last 3 weeks or so I'm making up for it lol.... So goes my life!! Take care

Last edited by Tarastomsgirl; 10-10-2007 at 03:09 PM..
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Old 10-10-2007, 05:36 PM
 
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EnjoyEP: I hope you won't be met with resistance regarding any request you make for B12 testing...your symptoms warrant this as a precautionary measure. It sounds as though you've got the disorder/condition nailed down as far as naming what it is, but I would never discount verifying (or negating) a potential root cause--especially one as easily treatable as a vitamin deficiency. You owe this to yourself, given how long you've suffered.

Tarastomsgirl: It sounds as though you've suffered to an even greater degree, and like EnjoyEP mentions, I can relate to just a fraction of what you describe as having been through...I certainly admire the positive spirits you've been able to maintain despite what you face each day in terms of how you feel.

To you both: I more or less stumbled upon this blog during a search about orthostatic hypotension, which I've begun experiencing of late, and which happens to be just one symptom in a long, diverse list of others. I was also recently confirmed (through the uMMA test that I mentioned to EnjoyEP) as B12 deficient. Go figure. I don't fit many of the traditional risk factors (e.g., I'm not a vegetarian, I'm not elderly, I'm not anemic, etc.) Apparently that doesn't always matter.

Interestingly, my symptoms (extreme fatigue, dizziness, weakness, mental fog, muscle cramps, body aches, heart palpitations, numbness/
tingling/burning sensations, ringing ears, and so on) immediately followed a summer's worth of daily, strenuous exertion in sometimes dangerous levels of heat and humidity. Coincidence? Who knows...but stress is stress and your body doesn't always distinguish the sources...
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Old 10-11-2007, 04:57 PM
 
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Default Different approach

I won't go into details, but I went from dying to surviving thanks to my different approach to my health issues.

You should always ask any health care professional what causes whatever it is that you've been diagnosed with. If they say, "We don't know what causes [fill in the blank]," why would you want to put your life in their hands? Find someone who does know what causes your affliction.

If a health practitioner suggests a treatment, you should always ask, "Is this treatment curative or palliative?" If they say it's palliative, then you may want to find someone who can offer you something curative.

Please realize that this approach flies in the face of medicine-for-profit as it's practiced in the US.

I'd suggest consulting with someone like Dr. Bill Deagle. His Web site is at http://nutrimedical.com/ . If his approach sounds totally foreign at first, that's a good thing!

After getting the basics in order, start rebuilding your cells, tissues, organs and systems. Find a chiropractor who knows what causes your problems and uses nutritional therapy in their practice. Yes, I said chiropractor. They do much more than correct orthopedic disorders. The one you choose should probably use http://www.standardprocess.com/ products.

Learn everything you can. http://www.lef.org/ is a wonderful resource. http://whale.to/ is life-changing.

When I was young, I was dedicated to seeking knowledge. Now, I seek only truth. They are not the same.

Don't let those who profit from using knowledge as power make you a victim.
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Old 10-11-2007, 10:30 PM
 
Location: SC
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Quote:
Originally Posted by EnjoyEP View Post
Any advice / help would be appreciated -

I am a 30 year old male in otherwise good physical health.

At about age 25, I started a running regiment that went overboard. Vigorous running with no rest days / a lack of recovery, combined with essentially a starvation diet. Did that for two years or so - very foolish and dumb.

Around that time, I came down with very negative symptoms. Extreme daily fatigue. Dizziness. An "itchy" or "tingling" (feels like cotton is rubbing against me) feeling especially in the head, but also in other parts of the body. "Foggy" head. Pressure in head. Weak. Shaky. Bizarre feeling in the corners of the eyes. Nauceous / dizzy quite easily with movement. A feeling that I need to vigorously shake my head to "losen" the feeling up. My skin on my head almost feels like it isn't getting enough blood so I rub it to try to get the itching / tingling / cotton-like feeling out. Not fun. (I actually sometimes have my wife sit on my head with full weight - seriously - this seems to give the symptoms some relief. Sneezing also...as weird as it seems...seems to help, albeit only for a few seconds).

I ended up totally rectifying my habits. Started to eat very well and very often and very healthfully. Still, things didn't significantly improve.

2 years ago I gave up running to alleviate my symptoms...they were really negatively impacting my every day life.

Haven't run in 2+ years. Have ate like a champ for 3.5+ years again. Have taken Vitamins (especially B and C) as supplements.

Still...although my symptoms got to the point where I could live with them and minimize them somewhat, I have fully plateaued for the past 1.5 years and am NOT getting better. After a few months now of having lesser symptoms again, this past 2-week period has seen them roaring back (no noticable change in lifestyle, etc.) and it is driving me NUTS.

While running poorly put me in this hole, next to my wife / kids and my faith, running and other sports (eg: basketball) are my love...I cannot do them as long as I have these crummy symptoms. Also, things like work and fatherhood are negatively impacted with these crummy symptoms.

Now, it seems like the things that really exasperate my symptoms are: a) if I run or do any hard cardiovascular activities (which I pretty much avoid now)...I will feel miserable for the next 48 hours or so even if I do a 15-minute ultra-slow job. Also...b) If I wake up from sleep, turn over and go back to sleep - eg: "sleep in".

Both of those especially cause problems.

However, in another weird twist to it, if I sleep only 6 or 6.5 hours - wake up right with my alarm - generally 80% of the time the symptoms are minimal or nothing during the day (unless, again, I would attempt any of those cardio-type activities).

I believe what I have is POTS [Postural orthostatic tachycardia syndrome]...that is what an MD recently diagnosed me with after years of negative tests, bloodwork, MD appt.'s, etc. (that all said I was healthy). My pulse rate zooms up when I go from a lying state to a sitting state, and again from sitting to standing. Thus, he thinks I have POTS and he put me on Midrodine (which doesn't much help).

With the itchiness, cotton-esque feeling and the sluggishness, brain fog, lethargy, etc., I have somewhat felt like I have adrenal fatigue or a thyroid issue. However, all thyroid tests have checked out, and most MD's say adrenal fatigue isn't even real (and my cortisol tests all check out).

Sometimes I think it may be a sinus issue, however, that doesn't explain how it'll subside quite a bit for a week or two, and then resurface, or why it is worse after cardio activity.

Does anyone have any thoughts on this? Anyone with experiences similar?

I am running out of hope to ever feel normal again. This really stinks so badly!!
Wow! Are'nt you tired of being sick and tired by now??? Isn't it about time you go see a Naturopthic Doctor???? Seems like you would have learned by now that Medical Doctors are not trained at treating chronic and degenerative conditons but the good news is that Naturopaths ARE!


To find out what you might have and truly get another second opinion from people have have been curing so called "incurable" diseases for 25 years (because they have extensive knowledge and training on underlying causes of diseases and conditions) you can contact and set up a phone appt with these people. www.holistichealthline.com (broken link) after you fax them all your medical records.

You can also check this list to try to find someone near you but the people above I KNOW are good because I go to them.

Naturopathic Medicine Internet Resources
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Old 10-12-2007, 11:48 AM
 
Location: Metro Milwaukee, WI
3,185 posts, read 11,052,176 times
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Default Naturopaths

To the last two posters -

Yes, believe me, much of what you both are saying, I have been saying myself. Frankly, for the most part, I despise our western medicine / physician practices. Believe me, I am more fed up with western medicine than anyone.

Western medicine is great in the event of a catastrophic event - heart attack, broken leg, brain aneurysm, etc. But for preventative, good health that does not involve popping a pill, or, in dealing with a deep-lying condition such as chronic fatigue, obviously western medicine not only is inferior, it frankly doesn't care.

However, my basic problem with naturopaths is that quite frankly, I cannot afford their care. It sucks, but that is just the way it is. I went to a really, really good accupuncturist / Doctor of Oriental Medicine, whose care I am quite certain I would have benefited tremendously from. However, most of what he wished to do with / to me, would not have been covered by health insurance. Thus, just the initial procedures would have been $460.00 out of pocket, and that does not even include the main, general procedures that would have been held for quite some time thereafter.

Thus, I frankly cannot afford that kind of care. My wife stays home with our 2 little ones, I just cannot throw out hundreds and thousands of dollars on naturophatic care.

I am a firm believer in this care, however, it seems almost as frustrating as western medicine (in a completely different way), as if you are a 50s-some person who has accumulated finances, or is single / no kids and can afford the care, then it is worth it, but if you are a working slug like me with mouths to feed, it is just too pricey.
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