Debbie Rose

Oh YES.... forget them at least once if not twice a week and I have tried everything!! I now must sit on my bed before I get out of bed and take them before I do anything else.

I have been successful 5 days in a row. Even harder is my evening pill I must take with 360 calories of food-that's even harder -miss it every 3rd day or so. My foggy brain and fatigue issues short circuit my memory almost every day. My pills are in a 30 day pill box and now sits next to my bed...so far so good

Its hard to find a good reminder-some use cell phone alarm clock and it works

Good luck

Debbie

Hi Mike-my first question I have is what kind of snacks and meals are you eating? are you following any portions percents-as in plate having % of meat to veggie to carb?

# Years ago I noticed dropping blood sugars an hour and a half after eating a carb-like cereal with sugar and milk- and the drop was fast and severe. In US BS by glucometer home checks normal is 90-110 and I would drop to 45 AND FEEL IT!! I saw a endocrinologist and he did some blood tests and said I was insulin resistant and so I basically started on a diabetic conscious diet and that was why I asked about food choices..I have educated myself on dietary changes for diabetics.

The important thing to remember is that we need carbs for energy-its the type of carbs that is important AND being sure to add protein to any carb intake. The bad carbs are all the simple ones-sugars,honey, agave,fruit juices are all the bad ones. They do not require digestion-it goes right into your system. The good carbs are those that require our intestines to digest it thereby burning calories and more slowly absorbing the carb-breads, crackers, cereals,rice,potatoes-sweet potatoes are better,corn,peas,backed beans (legumes-dry beans) Are all good carbs in correct "quantity" and must be eaten with the correct amount of proteins with it.

The American Diabetic Assoc has a great web site to help you learn the correct portions for meals and snacks- diabetes.org and a more abbreviated (I think easier to navigate) is dlife.com these will give you lots of info

Hope this helps

Debbie

Russian Anchor,

I have spent over 10 years with symptoms, palpitations came first, then the HR issue-but mine was as low as 42 and as high as 152. And I have a family history of SVT's on my Mom's side so I thought it was the start of that.I went into a major flair in May and could no longer work because the stress would activate all my symptoms and also cause my mind to freeze-not good if you are in the middle of a conversation. Nov 30th I had Tilt Table Test which confirmed my diagnosis o NCS- a cousin to POTS...Up until then my former doctors and my family sincerely believed I was a hypochondriac and did not take anything I said seriously...I was lazy and just trying to get out of work...so we have all been there...believe me. The anxiety would hit me as my other symptoms got worse-elevated, until I rested and removed myself from my stress, its a response of the rapid HR for some.

So good luck and keep pushing forward and you will find the answers

Debbie

I just reviewed the pharmacological of Plavix and of course your little pamphlet they gave you also states that the "primary " side effects is bleeding-all kinds of bleeding. However there are alot of medicines that should NOT be taken with plavix (again listed in the pamphlet) I could not find anywhere that it caused an issue with BP or drowsiness. Its mechanism attacks the cells lining of platelets.

Having said that-realize that there are several types of blood thinners out there, and you may have a better fit with one of those.

And I know you know this but remember not to go off med-but a call to your doc is deinitely warranted

Hope this helps

Debbie

As everyone above has stated if rest, hydration and increased salt brings it below 100 most doctors consider it good. From what I understand- the number was never as relevent as the lack of symptoms or types of symptoms with high heart rate. I feel horrible with pounding HR when I am in the low 100's because my resting is between 48-62 but my doctor is not concerned. Most doctors and ER's will get concerned with HR closer to 200 that does not go down with rest-just FYI...symptoms of chest pain, Shortness of breath, pain going down an arm or between shoulder blades, sweating, nausea,pain going up to jaw-with a HR over 150-160 should be addressed IF it does not go away with rest-and sometimes even when it does-a call to the doctor just to notify them is a good idea. It does matter more of course if you have heart problems and ANY high HR with symptoms must be addressed with a doctor.

When in doubt-call

Hope this helps

Debbie

Great News Sarah !!

I have such horrible fatigue when I tried metoprolol years ago for palpitations and it only made it much much worse so had to stop

Glad it worked for you

Debbie

I am no expert on POTS but there are website accesses listed in the "Information" option at top of page

I have the NCS-Neurocardiogenic Syndrome/vasovagal syncope/Neuraly Mediated Syndrome (Syncope)-all used intermingley with each other so my symptoms are different. There is also a link in here somewhere for Vanderbilt Clinic and their description of POTS is very detailed

So feel free to explore-there is alot of information here

Also note that most of us have several conditions in addition to or concurrent with our primary dysautonomia and so some of your symptoms may be o a different "added" condition as well

Hope this helps

Debbie

Zig Zag LINES !!! YES !! thank you!!! Had it again recently, but first experience was over 5 years ago with what I now think was my first flare before a second one 2 years later. And I have blurry vision with fatigue and at end of the day. Went thru all the evals or MS at that time (first time) because of severe fatigue after being in 70 degree full sun weather along with visual issues-all negative-and these were neurologists but no mention of knowing about autonomic dysfunction

So SHathaway, CONGRATULATIONS !! So is that Asheville,NC?? If so, could we talk about the doc you found? Duke in Durham just started a syncope clinic that works up for autonomic dysfunction but so far only does tilt table tests-nothing else and I need answers (as do we all) But great to hear or you !!

Debbie

Please let me know how it goes?

While I was at my son's wedding in Nov. I shared a room with my sister and she commented on my snoring again...no one to hear it usually, so I too need a new study-((((sigh))))

Debbie

My body temp has always been sub-normal at 97.6,my entire life-just accepted it as my norm-odd to find others like me

When I had basic sleep apnea I had a C-PAP to force air past the obstruction; but it may be equally good for you to have some O2 too. They can now do home Sleep studies and will it you then and test the equipment then in one visit-which is nice

Debbie

A specialist in dysautonomia, or syncope, or electrophysology can evaluate the in depth areas that require results-like BP's sitting,lying and standing - a PCP would not know to do this. The Tilt table test will tell you which autonomic dysfunction you have and some places do "sweat tests" and muscle biopies which helps to rule in or out the neuropathies that also sometime show up. And once a deinitive diagnosis is obtained then treatment can be more focused too.

I have Vasodepressor vagal syncope-a cousin to POTS...I tolerated only 23 minutes on the TTT before my BP bottomed out....I am on fludocortisone daily and try to drink over 3 liters of fluid a day and eat high salt diet.As instructed...and I wear compression knee highs all the time too.

Specialists take extra years in training in their area of focus and know both all the right tests and all the possible treatments for a given diagnosis

Hope this helps

Debbie

Have you been evaluated for sleep apnea?? You have an oxymeter so do you have a lung problem or just one of your toys for healthy monitoring??

Where are you affected most by the DAN?? Any O2 saturation below 92% consistently is a major concern and more so i it is less than 90. Please let a doctor know about this number-sleeping or not-its not something to put off.

Debbie

My chest pain comes and goes but I have tracked it and "Most" of the time it is stress related and half a clonazepam (if it is really bad) helps alot. I have learned not to mention to my PCP because she will feel the need to do an EKG which for me is always OK....I have mild diastolic heart failure but it doesn't affect the % of my heart function-its a stiff chamber that does not fill well.

My palpitations get worse if I have not kept up with my fluid intake so I try my darnedest (yes spelling is correct-looks weird) to keep up with it.

But when in doubt-get and EKG every time

Liability wise the "warnings" are important because some people have really bad conditions that a foot bath could cause to get worse. As long as the water is warmish-check with elbow to be sure (some times a neuropathy first affects the ability to determine temperature with fingers (or wrist like we were told for baby bottles)) and you have NO open sores or skin breaks. With feet-the importance is normal skin color, no red spots that persist, no open sores or wounds on a day to day basis-healthy feet in other words before considering a good soak

Hope this helps

Debbie

My first cardiologist and Electrophysiology Cardiologist were not as familiar with the dysautonomia's but another cardiologist I went to knew I needed to see his EP Cardiologist because with his check of my HR and BP-lying,sitting and standing with time intervals were way off-HR up with continued drop in BP. I saw the EP Cardiologist and he told me about the fact that the Syncopy Clinic had just started to train for Autonomic Disorders too. And thru them I had my tilt table test. I was found to have a dysautonomia "cousin" to POTS . I never passed out but got dizzy/lightheaded enough to make me sit down before I did....why don't they get that? Some of us can sit before we fall. I also suspect I have other issues but it has taken me 6 months of aggressive pushing to find the right answer. Odd to because during a stressful time 4 years ago I had these symptoms and no one had any answers-went to cardiologist then and all the tests were basically normal...so don't give up, as "Stateof" said-some docs aren't seeing enough patients with our symptoms to learn more about it...so keep on looking

Debbie

I was told one of the best types of exercises is a recumbent bike. And while back when I had shoulder and the "equipment" was in use they put me on one of these and since I could recline a good amount, I was able to peddle 10 minutes with my HR only going up 20-30 BPM's (beats per minute) which is fantastic for me. I am trying to make my own with parts of a bike, but have not put it together yet-or figured out how to put it together-LOL-brain not working today. I want something I can put away under my couch when not in use; and put in front of my recliner to use so I can lean back in my recliner and peddle away. My recliner back part reclines without needing the bottom to be up so live in my rocker/recliner. So still working on it

Debbie

Thank you and Merry Christmas to ALL

Debboe

Hmmmm. This was a curiosity of mine as well and looked on line. Unfortunately the most common drinks, including pedialyte have sugars in them but also artificial colors as well which is not good. And of course the best ones are the most expensive too. I went to a website "worst and best electrolyte drinks" on paleoedge.com and it was daunting. I guess I will stick to my water and add salt to my foods

I too would love to hear some suggestions

Debbie

Hi Sylvie,

Its funny but as a health coach, I have spent 6 years explaining depression as a chemical deficiency like insulin or female hormones and that is what the antidepressants are meant to do. I have convinced quite a few "manly men" to consider becoming chemically balanced and have been successful at it. That has been my description with anyone suffering from mental disorders-at least depression and bipolar...schizo and the "paths" are another story.

I too have functioned well with my depression just accepting how I have felt, with several lower slips into ideacions but hey, I am still here. The same with my "fibro" diagnosis and the severe fatigue. I raised my son alone and he turned out great but it was challenging to be sure. But other things had to be put aside to be able to continue to work and raise my son. He is 35 now.

When my heart races and pounds for too long my anxiety pops up but I was given clonazepam and it actually works most of the time-I take a half of a 1mg with no other ill effects-odd that it works-have heard negative things about it.

So Sylvie what were your symptoms that lead you to believe you had small fiber neuropathies?? Is that something a good Dysautonomia clinic would look at as part of their workup?

And what do you mean by visible nerve death??

I agree with the adrenaline surge- I think that is an issue with our women (in my family) and in fact may be why both my Mom and Sister has had ablations for SVT episodes. My Mom's heart could race just at the thought of company. I had one of those that lasted 3 hours when I was at my Mom's Assisted Living for their Christmas Party-it was horrible and have no clue exactly about the cause. My sister and my brother and his wife were there and my Mom's dementia was in rare form...it took me almost a week to recover from it-NASTY

That is the part that concerns me-the unexpected reactions away from home without a way to stop it

Anyway, it sounds like we are very much alike in our conditions and am enjoying this back and forth

I am so impressed that you both work and exercize !! I exercise and am wiped out with major symptoms the next day or 2 !! I am so frustrated but I do core strengthening with stretchy ropes and a balance ball-but I go slow and take alot of breaks.

Oh yes, Each day is the same-take time to see what I will be dealing with and go from there. I am not able to work because with stress of the job my heart rate goes up, which brings anxiety and dizziness and SOB (short of breath) and then my focus,memory and concentration go. I am a telephonic health coach so to suddenly go blank in a call is really bad. But the stress came when they changed the requirements of each call that added my stress to each call which would pop up my symptoms. So I spend my time trying to keep my symptoms at bay. If they are frequent or all day it just rolls into the next day, and the next...miserable

Its just me, with my sister beeing here for the past year-unemployed...so I am on my own with this. I have a great son but he just got married and has alot going on and lives 5-6 hours away. SO I do things in 10 minute increments and rest as much as I need.

Hi All and Sylvie,

Well this was a waste of worry. The Doctor was a psychiatrist evaluating my mental status...well I have had depression since my 20's and on medications forever. Part of my symptoms have been the anxiety that pumps up with the rapid pounding heart rate and shortness of breath and they did not know it was part of my dysautonomia. So they are more informed-had my TTT results and my 21 day telemetry report too. They asked me if I thought my "mental issues" were preventing me from working and I honestly told them no....so we will see what is next.

Debbie

Hi Sylvie,

I was told I was seeing a doctor-was that the person you saw or SSDI?

I know what you mean about the Long Term Disability people. The lady dealing with my case is trying to say it was a pre-existing condition and so I don't qualify. What I was investigating during the years of 2010 to 2013 was pounding heart rate and drop in BP and this "person" is saying I had a heart condition. All the heart tests were negative and I was placed on metoprolol because the palpitations bothered me. But it caused so much fatigue I stopped it after 6 months. My family-well the women- have a SVT episode issue and that was what I thought I had. Now that my TTT was positive for vasodepressor vagal syncope at least I can prove her wrong. Still trying to get all the papers together for them. Just finished my SSDI papers and mailed them today.

I have had fatigue since 1995 and was told it was fibromyalgia but once I had gastric bypass and lost over 100 pounds the "pains" were minimal. But brain fog and problems with focus and concentration were all there. I had to change alot over the years and saved all my energies for my job and lost friends and could no longer enjoy my hobbies.

Until the TTT results my "family" (except my sister) thought I was just lazy and trying to get out of work-Farthest thing from my mind!! I love my job!!

Unfortunately I react badly to stress and though I love helping people the other requirements were changed-increased-and were difficult to manage which caused increased stress. Now just thinking about a stressful situation gets my heart racing...

Anyway, I am nervous so I am jabbering on. Thanks for answering my questions. I will let you know how it went

Debbie

Same here Big Trouble..I eat just a bit too much and I tach with a pounding for about 30 min's...I usually eat 4 smallish meals and I am fine...Also eating too close to bed has me taching in bed. Not nice...I have not yet been tested for GI motility-difficult to find docs who know about dysautonomiaDebbie