Floody, Flood, Flood

Yeah! It was sucky! My family vacation that is. We didn't go on any vacation, because Jeff got laid off. We were going to go to Disney Land, but then we were in search-o-job mode and when Jeff got an offer with Mosy two weeks ago we decided we could go on vacation this week, because he starts his job Monday.  We are glad most of all that he starts a job Monday, but we decided, since planning last minute Disney Land was going to cost a fortune that we would let the kids decide where to go camp.

They wanted to go backpacking because that is what we did two years ago, and despite the whining and moaning, they claim it was the best trip ever. So we outfitted us all, and when on down to Escalante. Only problem..... it decided to be a desert monsoon this week! That meant, the canyon we stayed in the first night, although out of danger because the cave we stay in is high, had flooded within a few days of us coming in. Calf Creek rarely floods, but it had. So the next day we hiked out since the weather was not looking great. It was a wise call because the Escalante and everywhere was flooding later.

We went to Bryce Canyon, and slept in the campground, set up the tent in the rain, and then it stopped raining. The next day we got 1 hike in at Bryce before the monsoon hit again, and then we ended up in Goblin Valley last night, and this morning.

It was a bit of a tiring trip. Some fun, but a lot of storm skipping, and too much driving. I am glad to be home! Off to bed and running the Speed Goat 50K put on by Karl Meltzer starting at Snowbird up Little Cottonwood Canyon in the Morning. The claim by Karl is that this race has no flat parts on the course. It is all steep up and steep down.

Let you know how it goes.

Night People.

Congrates to fellow local ultra runner

http://www.ksl.com/index.php?nid=148&sid=11676154&hl=2

My friend John Bozung, who is the RD for Squaw Peak 50, Katina Mosa 100K, and the Katoola Snowshoe Marathon and 50K.  He is running number 300 on Saturday! Now I wish I was doing Des News this year, for road races it is one of my favorite courses, and it was my first marathon in 2007.

Did my trail work for Wasatch today. I survived the heat! I only need almost 2 gallons of water, 12,000mg NaCl, and 7,000mg of KCl, it seems like maybe we are figuring some things out! That makes me feel more hopeful!

New from Dr. J

So I went in to see Dr. J today. She says she thinks I might be in the early stages of type 2 diabetes because I am showing a lot of glucose intolerance. I hope she is wrong, but she ordered a 2 hour glucose test.

Second, she says "I have been discussing your case with all of my colleagues (which translates to you are a strange case that is a mystery to everyone)" not what I want to hear. But she is ordering some weird POTS test that they take your blood while you are laying down, and then having you stand up for a while, and take it standing up. She says in 17 years she has only performed this test maybe 3 times, and out of all the doctors I talk to she is the only one so far that knows anything about POTS, and can actually tell what is going on with my body.

Everyone else blew me off, when I said my glucose was raising over 120 points after I eat (within 30 minutes) because "everyone's raises!" Yes, but not over 120 points. She actually knows that is not a normal pattern..... ding ding ding.

Anyway, I think it still may have been an adrenal problem, so I guess we will see. But if she is right, she wants to start me on metaformin.

At least my body seems to be mostly getting better, and Elena's salt recommendations help, but now we have to monitor my blood pressure, because it does strange things to it. Why can't I have something normal, like.... I don't know, Rabies? There are shots for that!

The Jeff Challenge

This is more spouse harassment than anything. See, we fight in our marriage because it is fun :) I told Jeff today "Be nice, or I won't fight with you anymore"...haha... love it.

But today I was egging him on, and told him I would challenge him in a 5 K run in Mapleton that we have traditionally ran in the past.... only I want to make it fair so I am going to run from Lindon to Mapleton first, and then race against him in the 5k.

OK, the fair part is a joke, but it is mostly to get some speed challenge when I am tired, and push it when I am already expended. This is my mode of training for Wasatch.

I am going to try to make my run from Lindon to Springville all trails if possible. Next weekend i will be running the Speedgoat 50K, a tough race, that the course profile looks like a messed up intestinal track, and then I will be running the Katcina Mosa 100K.

I am hoping these back to back races challenge me, and help me hone in even more on my hydration and electrolyte balance so I can have a great Wasatch100 time!

Fight number 4... and salt makes a difference!

I did my fourth Muay Thai fight today, and wow! Salt made a huge improvement on my life. I did about 5000mg potassium chloride, and 10000 of sodium chloride total in my water solution, and in Scaps.

This is the first fight that I have not felt dizzy, it is the first fight that I didn't feel winded afterward, and I actually didn't even feel like I was that exerted after. The previous 3 fights I would get done and  just be dead and unable to move off the floor for at least 30 minutes.  The adrenaline rush would wipe me out.

Now I think my adrenal glands are not stressed anymore and are functioning properly with the supplements I am taking, and the added salt prevented me from losing energy and getting dizzy.

This was my best fight yet, and I think I have figured out a fluid solution that works for me, and should make my races also much better! I am adding 3 tablets of Nathan Electrolytes to a 32 oz bottle. These are new and similar to Nuun, however they contain close to 1000mg of sodium per tablet and they have sodium chloride, Nuun dose not contain chloride, which is a problem if you are doing endurance events. I found a potassium effervescent powder containing 408 mg per package. I drink about 3-4 20 bottles of just potassium water, and then about 6-8 Scaps, and 32 oz of the Nathan solution with 3 more packets of potassium in the water. The effect was amazing!

I am glad to finally have something that is working, not sending me to the ER, and probably will make my times a lot faster on long courses! I even ran right after the fight. I ran about 3 blocks (just under 1/2 a mile) to get some sushi, and ran back. That was just after the fight, and I wasn't winded, and was sprinting, and want to go for a longer run tonight!

I am very happy about this fight, I have been training a lot too, I know my technique has improved, but having energy, not getting winded, and not fighting vertigo sure made it easier! I have never been more nervous before a fight either. I felt nervous and was having a hard time not panicking this time. When I got up to the ring I saw Tandi, she was rubbing Vaseline on my face and headgear, and just thought "Warrior", Tandi is a warrior, she is watching and cornering, be a warrior, and suddenly I was.......

And Elena says....

" Tara, you over react to everything! You changed everything too fast and so you ended up in the ER" and damn, she is right.

So now she is in charge of changing my diet to match my needs, and not all at once she says! It will throw my body into shock.

So the final goal is that I need about 5000mg of dietary salt per day, and 10000mg of dietary potassium.

For races I need 5000mg of salt per litter of fluid! Yikes! I said " Holy shit! That sounds disgusting" well, I didn't actually say shit there, I was just thinking it. Like is that more than Ocean water? But I said "OK, whatever, I don't care, if you say that is what I need then I will do it!" and then she says "That is why I like working with you, cause you will do it anyway!" 

So then she said I could do 2000mg of actual salt in my water, and take the rest in Scaps. This means that if it is hot and I am running that I actually need probably 10000mg of sodium per hour! No wonder I about died on Bear last year. I was getting about 600-700mg per hour and thinking I was fine. Nope, I am not the normal person or body.

For now we are just doing salt intake, and potassium will come next, and I will stop over reacting, and start letting Dr. J and Elena be in charge of figuring out my intake.

Other recommendations.

Compression hose while running to keep the blood flowing out of my legs

Ice vest or instant Ice packs in my drop bags to somehow where and cool my body temp down. And probably take early start times until I figure this out, so I can survive and not die in the heat. This is not to get a head start on everyone and advantage, this is until I can figure out my bodies needs and reaction in the heat.

So, look for faster times coming up. This has been the issue the whole time. I knew there was no good reason I should not be increasing my race speed when my actual running speed has improved by 2-3 minutes per mile!

I need more salt and potassium then is humanly possible I think!

On the mend!

Wow, OK, I will post more later. But this whole saga ended with me in the ER 2 times for IV fluids last week, and another day I was in my friends office, a CNM, for IV fluids. I slept for 4 days straight, thought I was going to die. I was taking a bunch of Adrenal gland supplements, and I still am, and finally Monday morning, I woke up feeling mostly better. I went and worked out for 90 minutes. I was tired, and rested a lot that day. Tuesday morning I felt bad for a while, but got on top of it, and ended up feeling great. By today, I was full swing! I have been working out harder this year, and seeing my running times fall because of this hydration issue.

Well, I don't think I realized how much energy I have been losing over all. Tonight, I just did a short 3 mile run with hill repeats. I was hitting a 5:40 mile downhill, with no effort it seemed, no lung or breathing problems, no energy problems. My body was in sync. So maybe I am not too bad of a runner after all! My times are much faster when I am all balanced out.

Thanks for the suggestion on Coconut water, I actually have been doing that, about 1 gallon of low-cal Gatorade  (which I hate because of the dyes and artificial sweetener, but for some reason it is working better than anything else, and I need to keep my carb intake lower), Scaps, and water. This all seems to be working, and I think I am getting better, like really better, better than I was before I crashed. The crash started a year ago when I DNF'd Katcina. Now I am hopeful that I will be able to finish strong, and have a good chance of a sub 28 at Wasatch!

YAY! Let's hope this trend continues!

New one!

Now I am actually seeing  a lot of improvement and sleeping, however, I think my body is wacked out and suddenly I am having major blood sugar issues. I think this is a response to my Adrenals being out of wack, and maybe a sudden shift in fluids. I am now on a bunch of Adrenal supplements, but right now my body is not handling carbohydrates well at all, and my blood sugar is sky rocketing as a result. It does better with physical activity, but I tell you, this is a weird weird problem! I am now monitoring my glucose levels, and tracking everything. I had to educate my NP on this problem, and what it is and how it is treated, etc. Really not a lot of clinicians even know this problem exist, and my dietitian and Dr. J are out of town. They are the only two people I know that know anything about it, but I am glad my NP listens too me and doesn't blow me off, or have a huge ego!

I think my body is adjusting, and hoping my adrenals will heal now that I am sleeping, but I am having to be very careful and rest a lot, but also have normal physical activity, because it actually is helpful.

Postural Orthostatic Tachycardia Syndrome and Running Issues, and Life Issues in General

I decided to write this note because I have had a significant piece of information, that just made most of my life make sense. I decided to share what I have found out, because I am finding there are other people who have this same condition, who are never diagnosed correctly and end up like me just thinking all the symptoms are in your head.

The reason I decided to seek care is because increasingly over the last year I have had worsening symptoms, despite overall feeling much more conditioned and generally healthy. I feel like there is no reason why I should not have cut off an hour off of each of my courses I finished this year. Instead I had major problems on the Antelope Island 50 miler and finished having to walk the last 4 miles because I couldn't breathe, not because I couldn't run!

I did the Grand Canyon run, and did fine until it got hot, and then had some heat issues, the next day I was having fainting/lightheaded/ear ringing issues, that were only fixed by Gatorade, and more Gatorade.

I knew to take in Gatorade because The two races I DNF'd last year, especially after the Bear 100 DNF, I had the same issues and thought I was going crazy after waking up in the middle of the night!

I have been working with a Sports Nutritionist for almost a year now, trying to figure out these problems, and we are getting closer, but she cued in that I am getting very hyponatremic after these races, which is probably why I also was getting sick in the heat, and my times have been getting slower despite my running speed getting faster.

At the Squaw Peak 50- I ended up taking in 1500-2000mg of salt per hour, I mixed salt directly into my water because plain water just goes right through me. I felt better, I didn't die even though other people around me were because of the extreme heat that day. But I ended up making it to the cut off at mile 33 just 3 minutes to spare! Even though my times were faster at the beginning then the previous year, the heat slowed me down that despite the early start, I took more than 1:30 hours longer to complete that part of the course.

After that I sat for about 45 minutes to recover from pushing my time the last stretch in the heat, up the 3.2 mile sheep creek climb. I felt fine after resting, and started up with my speed again, until running across Marc and John and deciding to finish the course out with them, because the were both really dehydrated. Marc commented on me having the whole kitchen sink on me that day, and the fact is I have started carrying a lot more then I want to on my runs because it is saving my self. I need more salt then is almost humanly possible to take in.

Something just wasn't seeming right. Recently I started having major blood sugar issues during the day. I have problems in the heat, I get dizzy a lot especially during conditioning when we are doing exercises that go from laying or sitting to standing. I have breathing issues, anxiety like issues, and get sick to my stomach all the time, even when I am not working out.

I actually have had these issues my whole life, at least since i was 12, but I didn't know how to tell people what was wrong with me. I thought it was all in my head, but after some of the symptoms started interfering with my performance so much, I could no longer think they were just in my head anymore.

So I went to see Dr. Liz Joy, at the Madsen clinic at the U of U, and although she is still testing me, and I don't have a positive confirmation on my diagnosis until some labs are complete, she is 90% sure I have Postural Orthostatic Tachycardia Syndrome (POTS). I had never heard of it before, and neither have most doctors. In fact if you do an EBSCO search you will be lucky to find 20 related articles. Elena had mentioned something about being tested for POTS at our last visit because I think the sodium issue is perplexing her. But I didn't know anything about it.

So I did some research on it, and suddenly my whole life is making sense. Like I thought I was crazy my whole life! I have been accused of being attention seeking for some of these symptoms, and so after that happened a couple of times, I learned how to control most of them. In fact many of the symptoms I have had in life, that I can't explain, I have just decided are in my head because everyone else told me they were.

So I am posting this, so that if you see this in yourself or kids, you may consider having them tested by someone who knows what they are talking about instead of living a life of being misdiagnosed, or even told they are making the symptoms up, or they are all psychosomatic. A lot of people suffer silently, like myself, because you get so used to compensating for the symptoms, and you are afraid to talk about them, and don't think they are real anymore.

Here is what is happening in the body: there are different forms of this syndrome, it is an idiocratic illness, which means it is correlated with different disorders, and many symptoms overlap, but it is a way of saying "we don't know why the hell you have this, we just know you do!"



Dr. J told me most people with this syndrome end up gravitating toward the things that help control the symptoms because they can't tell anyone what is wrong, and it is often misdiagnosed as a range of mental disorders because of the anxiety, depressive, and even bipolar like symptoms that it sometimes looks like, but does not quite fit. This is the story of my life, nothing quit fits!

Basically these are the symptoms I do have, and these are the symptoms I don't have.

 75%-85% of people with this syndrome are blond-haired, blue eyed females, and between 15-50 years old. It may be hormonally related because many people notice an onset of symptoms around menarche. In my case, I believe menarche was the start of these symptoms.

The first thing I read is that many people who have this syndrome have some degree of hyperextensible joints. While There is a a wide range of severity Eh-lers-Danlos syndrome is one that is most associated, and it can come in mild to severe forms. I have hypermobility in my arms, knees, and also the tendons in my ankles. This can also lead to higher rates of injury and sprain. Interestingly, I used to twist my ankles all the time, however this has not been a problem the last two years, I believe because with ultrarunning, I have probably gained enough strength, that I have better control of these parts of my body

Second the connective tissue in the lower extremities may have more laxity and be more prone to venous pooling.  While I do not have the most serious symptoms of Ehlers-Danlos syndrome the symptoms I do have are: loose unstable joints, hyperextension of some joints, easy bruising, and abnormal wound healing. I also have lower muscle tone despite training enough that I should be an elite athlete! Another condition I need to be tested for is osteopenia, or low bone-density, because it can be associated with this disorder, and I have a past history of an eating disorder on top of that. When I should have been making calcium deposits into my bones, I was probably losing bone mass! Yep, double whammy!

Third, associated with Ehlers-Danlos syndrome- nerve compression disorders, functional bowel disorders, and Premature Rupture of Membranes during pregnancy-  I have not been diagnosed officially with the first two- but after my research I found out all the weird muscle and nerve sensations I have in my extremities, probably fit, as well as digestive issues. Oh, and with my first pregnancy, I had Premature Rupture of Membranes as well!


The second syndrome I found associated with POTS is Arnold-Chiari malformation- also comes in different severity of symptoms. Basically caused the brain not being profused correctly, or hypovulimia. The symptoms I have that fit this association :headaches aggravated by valsalva maneuvers (laughing, coughing, crying, sneezing, yawning), Tinnitus (ringing in the ears- not severe for me, comes and goes and happens more when I am low in sodium), Dizziness, nausea, muscle weakness, impaired gag reflex- I thought this was a side effect of years of bulimic symptoms, but it may be that i have just lost some ability to gag on my own because of this, dyspahgia (difficulty swallowing), Dyautomia (tachycardia, sycope), and polydipsia (extreme thirst), and hand weakness (comes and goes randomly for me, always thought it was odd)

The symptoms I do not have (thank goodness there are a few!) associated with these two are club foot, platelet aggregation (to my knowledge), vascular skin conditions, hearing loss, and swan-neck deformity of the fingers, also nystagmus, and I don't think I have sleep apnea. I don't think i have fibromyalgia, but I do have a lot of the symptoms associated with fibromyalgia.  Other symptoms I think I have- neuropathy- weird almost burning sensations in my arms and legs like- icy burn, tingling, numbness, that I want to run out! Stress incontinence and constipation are also associated.

Gastritis- while again, never diagnosed yet, I have bloating, nausea, burning sensations in the upper abdomen, premature fullness, discomfort with fullness, generally lack a normal appetite. Also IBS symptoms.

For Chiari symptoms- I have pain, weakness, and numbness in the upper back, shoulders, arms, and hands. One symptom that I do not have is sometimes with this syndrome people can not feel cold, heat or pain in extremities- I have feeling, just nerve issues, and muscle burning that is not really pain but just a sense of an urgency to have to move and work out the sensation!

One other auto immune autonomic ganglionopathy is associated with POTS. I have lots of these symptoms, but I don't know if this is one of the ones the lab is testing right now- severe orthostatic hypotension, syncope, constipation, urinary retention (my urologist says i am an enigma! After voiding, they can usually find 4-8 more cups of urine to drain out), dry moth and eyes. I do not have fixed and dilated pupils that is a possible symptom

"thoracic Hypovulemia- a person can either just not have enough blood volume, or in this case I may have normal blood volume, but vasodiatation that is too high, and not allowing pool to effectively circulate, or reduced stroke volume, especially in exercise- This can lead to low sodium levels, low profusion to the brain (which I am almost sure I have now! I will say why in a minute), and symptoms can worsen with heat and exercise, but running actually helps because you are moving blood out of your legs! my heart rate has gone abnormally high in the past with very little exercise and being conditioned, however, long distance running has improved this symptom.


Additionally- strange symptoms i have- I wake up feeling flu like every morning, until I get out of bed and move for about 15-20 minutes, then It goes away, I have feelings of anxiety when my brain actually is pretty calm, but the hypofusion to the brain can cause this, confusion and feeling disconnected from the world- mostly this happens with long period of standing still, or walking too slowly. I naturally move a lot when standing and talking in front of a group, and I always wondered why after being at Walmart I started feeling sick, disconnected, irritated, confused a bit, and just strange... it is because Walmart is a huge store, I am standing and walking slow for a lot longer than in other stores. This is why I hate being at Walmart! Now I know why, among other reasons :) It doesn't happen when running or brisk walking because my blood is being pumped out of my legs!

Insomnia- it has gotten very bad, but after talking to Dr. Joy and increasing my dietary salt intake to very high amounts I am actually getting some sleep for the first time in forever!

So because the brain is sometimes being hypofused many people can't get out of bed. There are a lot of symptoms like- loss of mental stamina, cold extremities, brain fog, and psychological burnout that are associated with POTS, and because some of the symptoms look like anxiety, and depression it is misdiagnosed. It can feel like a panic attack, and your mind may actually be calm. I always thought it strange to have panicky feelings, but also feel calm in my head. I have had anxiety around not being able to explain the symptoms.

Also, I am smart, and I remember things, but I can not always recall sequential events of my life history verbally without first writing it down and having something to look at. Like I forget large events such as surgery, when I am asked, until I think about it later. Like it would have been nice to tell Dr. Joy about the one outpatient surgery I had to clean out a staff infection in my knee.

I didn't realize until now, that it was probably significantly associated with POTS. I asked for them to give me an epidural for the surgery to clean out an infection in my knee because I wanted to watch (I know sick!). After that experience, I was grateful that I had natural births!

I started panicking (or it appeared like a panic attack) and having breathing difficulty as soon as the medicine went in my back. They sedated me, but after the procedure, I woke up in the operating room and looked at the blood pressure monitor and saw 75/15, the nurse saw my worried look and said "that's not right!" and I passed out again, and woke up a couple of hours later.

The next few days I had breathing problems, and panic like reactions that i could not explain. I believe now, it was related to the medication causing severe hypovulemia, and I was actually experiencing such low blood profusion, that my brain was not being oxygenated correctly.

I also can not take medications that I now realize probably the reason, is because I experience too much vasodialation, and low blood profusion.

The medication that i have found that works, works right away, or not at all. People have thought I was crazy, but the reason is that the medications are increasing my orthostatic pressure, which allow me to stand up and not lose energy throughout the day, instead of the things they are normally used to treat!

I won't go into my whole life, but throughout my life I have had these strange sensations, and panic-like reactions, and now that I think about it usually happened after being out in the heat, probably drinking water but not enough salt, and more often while on the lake or doing water activities, to amplify the sodium loss! People thought I was doing it for attention, or having a panic attack. It was neither! I was likely very hyponatremic, and have since learned that always adding salt to my water, prevents this, and minimizes the panic feelings.

The most effective treatments are salt, exercise, caffeine, water, and stress management. Interesting that i have been intuitively drawn to all these things, and I can't tell people why I like running, I just do, but there is probably a physiological reason why.... My body is actually running better while I am running! I actually think more clearly, more creatively, and get a lot of my ideas while I am on a run. I have more spiritual moments while running. I have too much anxiety sitting because of this reaction, and it is hard for me to feel grounded while sitting in a church, or classroom. I feel more spiritually connected while running in the mountains, and partially probably because my brain is just working better and able to relax.

So I just wanted to write this, because I have been invalidated, and even harmed in some cases, from people not understanding my symptoms. I believe it may be a large factor in having struggled with an eating disorder for so long. Even after I talked to Dr. Joy, people who have no knowledge of my history, started telling me I must have the wrong diagnosis, and I should not trust this Dr.! Why? Everything she said made sense, no one else in my life has given me a diagnosis that makes sense. I have tried to fit myself into differential diagnosis, that don't seem quite right. This one fits! And almost too much!

I never looked into it before I researched this but I have all the symptoms of restless leg syndrome, feelings of fear, even when I am not afraid, feeling separate from everyone- none of these were a psychological disorder, they are all associated with low blood volume, and low sodium balance, but everyone wants to put you into a mental diagnosis, and so you actually do start having anxiety because of it!

So now I am figuring out the sodium issue, and having better running experiences, I hope I can continue to find things to improve the symptoms, and get back to being able to perform and improve at the level I want to. But now you know, my drive to run is probably actually preserving my ability to function, because it would be hard for me to get out of bed otherwise. Managing the symptoms usually keeps them from getting worse, offers improvement, and sometimes gets rid of them. Although, with my history, they are unlikely to all disappear, but at least be manageable with the proper treatments.

The biggest one, is I do have to take more daily sodium in than I thought was humanly acceptable! Forget low-sodium diets! I can't get enough basically. I have to talk more with Elena about it still, she is on vacation, but for now, I am doing over 5000mg per day and adding an additional 1000-2000mg for every hour I exercise, especially in the heat. I am doing heat training carefully to improve my ability to run in the heat, and also figure out more specifically how to manage my need to drink salt water, and in what concentration! In general, I am finding I need to have some electrolytes in my water all the time, or water by itself is dehydrating, and makes the symptoms worse!

So bring on the salty food baby!

POTS and salt intake! May cure my problem!

I took 800mg of Scaps and gatorade before bed last night, and that was the first time I have slept through the night for about a month!

All these symptoms I have that are probably related:

I wake up feeling like I have the flu every morning and feel horrible until I make myself get out of bed, and then it goes away after 20 minutes

Breathing problems that come on with heat and activity

recently hypoglycemia

feeling like I have a panic attack that last for 2 weeks

insomnia

anxiety that doesn't seem related to anything, and comes on randomly

heat issues with exercise

sodium absorption issues.

and even the two medications that seem to be the only things that help- Aderral and Welbutrin, are sometimes used to relieve the symptoms of this condition. I have always told people anti-depressants work differently with me, and either they work right away and make a difference, or the don't work at all. No one believes me. But if they are working with this condition, it makes sense because it is effecting my othrostatic pressure, and it is that, not the anti-depressant mechanism that is making them work.