Relax86

Puppylove ~ you're post makes me tear up. I keep searching this forum for answers as to whether I'm sick or crazy. In my heart I know I'm sick even though I have very few who I know don't believe me. Why that's important, I don't know. As I have an entire forum full of people who know how I feel...also, I am much luckier than most in that I can drive, and work and function. At work yesterday I had to approach a confrontational situation and I felt my body go into serious overdrive....physically way more symptoms than was necessary for the circumstances. I was remembering my past life in a high stress, high dollar management position and realized that I could not perform that job today. My POTS just takes control. I spend time making every attempt to control the anxiety vs POTS issues that I have. I feel fearful many days of symptoms, public fainting, etc....I watch the forums for info on SSRI vs SSNI's to see which direction I could go. And I'm afraid to sleep. I sometimes feel like I won't wake up. And I sometimes feel like I don't know what I'll wake up to and I never know which is worse. I'm way off topic but your post hit a nerve tonight. As my friends are all in Atlantic City NJ starting their holiday party and I could not do it. I often wonder if there is something medically easy that's being missed or something terrible that's being missed. I find strength in the people here - like yourself - and hope that we all find answers. Good luck to you. I know that exercise has helped me as well as pushing myself into some low levels of discomfort. I never feel like me anymore and I miss her. But I believe we have a true awareness of quality of life as those few moments of normalcy that some of us experience just feel so good.

I say congrats....there's so much to worry about with this disease...if the money helps take away some stress then it's a great victory.

I did not tolerate florinef at all. But I was super flared up when I was prescribed the florinef. I got better with cortef, salt, moving (little by little), water and a little gatorade. I got rid of the gatorade and recently replaced with coconut water. I just started midrodine this past Saturday and I have quite a bit more energy as my BP was only getting so far with what I was doing. The midro gets me to 125/82 and seems to lower my HR and I feel energetic and mentally clear. The down side is headaches, head pressure and when this drug wears off (for me about 6 hours) I crash down off of it which feels pretty bad. But right now the benefit out weighs the downside and I pretty much hold that as my motto. At the same time I am trying to wean from the cortef. I've been doing just a 1/2 pill as my 3rd dose since Saturday. I have ear pain - which has always been my very first clue to my symptoms - which is slowly returning....so I"m staying on this reduced dose for about 2 weeks before I try and reduce again. I feel pretty strong about how the cortef supported my partial recovery thus far. And as it stands for me right now - I wouldn't change a thing. Good luck to you.

Congratulations. Best wishes ~ T

Using cortef was the only thing that got me thru my POTS flare. I believe anyway. I had all the symptoms of Adrenal Fatigue - textbook. Actually more so than POTS originally. I was given the Cortef and immediately felt better. Got an endo visit to make sure that I wasn't Addison's and that Doc said I was totally crazy and was trying to kill my adrenals. He offered to do the adrenal testing but I had to be off cortisone for 2 weeks first - so off I went and I got sick. He said testing was normal but would not share results immediately. He said possibly blood volume issue and he would re-test Aldosterone and Renin. 2nd check of that he claimed I was normal. So I went right back on cortisone. In 4 weeks I felt 80% better but had a relapse coming off of it. I weaned way too quickly. When I went back on it took another month for me to gain my ground back. I am now more POTSY than adrenal fatigue. I have just started midrodine which I don't believe I would have ever tolerated if I hadn't calmed down my system with the cortisone. I am attempting to wean from it now (I've been on 5mg 3x/day since May 18th). I do feel very cautious about it causing suppression. The endo that I saw was crappy to me and thought I was crazy but I believe him when he says this is a serious drug. For me I just found the benefit to be so immediate and helpful to get me through a stage in which I was strong enough to trial other types of POTS treatments. I still don't exactly know what I'm dealing with as far as hyper or hypo or just straight up dysautonomia but i know my body is just not right. Just wanted to share my experience with using Cortef/Hydrocortisone. Sometimes the benefits at some point out weigh the risk??? And at the time that's personally where I was. Take care and good luck. ~ T

Yeah, I have anxiety ~ do these doc's understand what it feels like in the 10 minutes before you know your body is going to faint and smack your head someplace. Or how it feels when I'm standing in the middle of the mall trying to buy my daughters a pair of flip/flops and my HR decides 150 seems like a good number?? This symptoms play with your emotions and I can very clearly distinguish what POTS feels like compared to anxiety. I told my Doc that I would happily fix my problems with a huge hunk of xanax if he thought I was just crazy but if he could kindly treat me first and do his job that would be great. He smirked at me and said he predicted the xanax and guess what - blood work positive for low blood volume, anemia, low ferritin etc...I still read every post on here about anxiety drug usage as I haven't ruled out that I could benefit from a trial of the right drug. But when POTS symptoms are low for me then I feel pretty good. I think the best plan is to look for each person's individual answer because we are all so different. Good luck

When I was at my worst I felt more comfortable in bed with both respect to the way my body was responding and my fears about what was happening to me. I didn't know what I had so I didn't know to stay down (or up for that matter). I think I helped myself by pushing a little, even though my hubby was telling me to stay in bed until this cleared. My gut told me this just wasn't going to clear. I would set little goals for myself to be out in the kitchen for about 10 minutes. Then back to bed. Then shower by 1p or 2p. Then back to bed. Then be seated at the kitchen table by 3 when the kids came home from school - then back to bed. While I was up for the short periods I felt terrible and scared. But each week I tolerated a little better. Never feeling good but tolerance building. I still don't feel good and it's 6 months later but I can work - uncomfortable every day - and function at low levels. Meaning I can't carry groceries, or I don't want to do what my usual routine was - things like lunch, BJ's, Target, visit my Mom, etc. In the beginning I could hardly tolerate the TV noise or light. My sensitivity was severe - the water noise from a shower made my skin feel like lightening. But I would try and turn the radio on for very short periods and chose a song that had a good memory for me so my tolerance was better. While sitting up I would play a computer game and breath thru symptoms trying to keep my mind somewhat occupied. None of it was easy and I still can't believe this is my life. My heart bleeds hearing your story b/c I can relate to everything that you feel. For me, unknowingly pushing thru the symptoms is what I believe got me better. At the time it was happening I had no medical support, was using a little hydrocortisone for what was probably the wrong diagnosis of adrenal fatigue - who knows. I learned everything I know from this forum. Added salt, tons of water, and now I use coconut water as well. Started Midrodine yesterday --- so the saga to finding a solution for us will always be 'to be continued' --- good luck.

Sending positive vibes and prayer. I believe POTS people don't realize our own strength. We have to dig so deep for every day living that we can withstand the craziest of circumstances. Hoping for the best for you and your home.

Cheers to all that can partake ~ and thanks again for all the super input...my intelligence has grown because of the hard work and research of the sufferers before me....So thank you...deeply.

POTS island is such a perfect description...so unbelievably clever and amusing. And only POTS people get it.

Igail - I have no clue what type of POTS I have. I have low BP's, right ear pain, my head feels like I'm on a descending airplane, internal tremors, resting HR of about 100, unable to climb stairs. Most recently the blood vessels in my hands pop out what seems like a spasm..lasts for a few minutes then goes away. I started out orthostatic hypo but then BP is low in the am and slowly climbs t/o the day. My family doc diagnosed me with POTS but I have had some weeks where the HR wasn't the issue but poor vision, body temp and digestion was... Labs show a blood volume issue, low iron, low ferriten, sodium, potassium. No other autonomic testing performed. I had a TTT but didn't faint, just felt terrible. I don't remember what happened b/c I had been hospitalized for 4 days and don't recall most of what happened to me.

Thanks.

The only drug I have been able to tolerate since this started in Jan is hydrocortisone. I originally thought I was adrenal fatigue. Found an endo who thought I was a complete nutcase but he did cotrosyn test to rule out Addisons. He said I would ruin my body using hydrocortisone and it seemed to him that's what I wanted. He also felt that I needed large doses of xanax to fix my crazy head. Since he was so mean I dumped him. I took what he said very seriously though.....however, the benefits for me outweigh the risk at this point in my POTS life. I had very typical terrible mornings and felt normal in the evening only to start it all over again the next day. The endo also found a blood-volume issue which he said I skewed my own results. Additionally I told him that during ovulation I get a 'let down' and produce breast milk. To me this screams pituitary and also that I'm one strange cookie. My mammograms are normal. I have found a good amount of people who use low level cortisone safely in getting thru some undiagnosed inflammation. I think it's helping me until I get a better game plan. I have a new symptom of my veins contracting out of my hands/arms Right > Left. I have no clue what that is - certainly my vascular system is confused at best.

I had 2.5 days like that last weekend. I actually started thanking people in my life for seeing me thru the tough 6 months of my most recent POTS bout. It was really, really great. And I made sure I enjoyed the days - totally grateful. My symptoms did come back. But my hope is that my body is fighting for homeostasis somehow and these occasional good days are a sign of good days to come. Amongst my days of fighting to accept my symptoms and try and make peace with it - it never hurts to hope and believe that this continue to diminish or one day disappear. Jen ~ I'm glad you got the chance to have that day and while I vigorously scan this forum for answers and info it was nice to read your post.

Inner ear pain was my very first symptom with the last bout of POTS and again with this bout. It crept up on me, along with night sweats, cramping, fatigue then the tachy's. My family Doc never sees a thing in my ear, this time the hospital thought I was nuts, and once D/C'd I ran to an ENT who also dismissed me as Lyme's or TMJ. For me this is proof that a connection exists.....so now what to do about it......hmmm

Thanks all. I'm a big calorie watcher so in my former pre POTS/DYSAUT life I would only have drinks on the weekends. Since my POTS/Dysaut symptoms I have dropped 10lbs due to digestion issues and loss of appetite. Or maybe I dropped 10lbs cause I stopped drinking...haha. I do like getting rid of all those nervy symptoms so I need to chose what might be the best med for me to trial. I have not had enough testing to know what I have. I don't qualify truly as POTS because my heart rate doesn't jump the 30 beats. But at rest it's can be 100 and climbs from there. My internal shakiness, low BP, peeing allllllll day, ear pain, and neck spasm are other present symptoms but my standing BP doesn't drop - its just too low when I wake up and usually keeps me on a ride all day. In APRIL I gave up the idea of further medical testing but I'm only 6 months into this and maybe I gave up too soon. Gonna search for a specialist in Philly soon so if I try a medicine I know why I'm going to try it. I have no clue if I'm a vasodilator/constrictor, no idea about my NE levels.... and as I read some of the forum people's post knowing those things help you know if you should be taking Midrodine, or Fludro, or a beta or an SSRI. I'm afraid to try anything. For right now ~ I had a mojito last night and it wasn't so scary.

As I get to know some of the folks on this forum, most people completely stay away from alcohol. I also completely avoided cocktail hour since start of symptoms in Jan until recently. I dehydrate too quickly and just didn't want the added symptoms or provocation of any thing else. Interestingly I find that when I have internal tremors or feel "nervy", have head pressure and I have 1 drink sandwiched with water/electrolytes - the alcohol will quiet my symptoms. This isn't a routine or even a treatment option for me. I just recently decided to have a drink as things are not getting better or worse and I thought a cocktail might lift my spirits in terms of feeling like the old me. Any thoughts on the chemistry of this or why it would help. I would hate to think a nice steady buzz is what I need in life ** just kidding **

What is IST?? Sorry for the basic question, I'm a little new

I am also plateaued at about 70% improvement. I'm grateful for that but still wish and hope for more. As I read other members posts it seems that many have more info on their condition...such as what type of POTS, noroepi levels, etc....I don't have those answers about my condition. But I also post most respectfully that it seems that those that do are not doing much better for having more info. I wonder if I should come to an acceptance of this life or push myself to see more specialists and endure more tests. I have not seen nuero, vascular, autoimmune and had a bad endo visit. Also my symptoms are so whacky wouldn't even know what specialty to see first. I live in SJersey and most people in Southern NJ cross the bridge into Philly for medical care. I'm up in the air as to how to handle this plateau. I'm only using hydrocortisone 5MG 3x/day which helps me breath. I gave fludrocortisone a 3 day try..and jumped off that bandwagon pretty quickly. I just don't see enough people posting things like - It took me a while to adjust to _______ (enter drug name) and now my symptoms are gone. Also, my symptoms seem to change weekly from high resting HR to R ear and neck spasm/pain, to internal tremors, to vision and digestion issues. I never have the same week.

Because I'm happy at my current job, my ANS symptoms are more tolerable. I felt like they were taking me over at the job I had where I wasn't enjoying myself and I had useless job stress. We all have job stress but that position just had the abundance of bull....!! Returning to work with POTS was tolerable when I had a position that gave me my soul back....my autonomic nervous system and my psyche rewarded me. Good luck. I know that it's only us dysautonomia/POTS folks that know how hard it is to put one foot in front of the other every day. SO congrats on your achievements.

"I joke that my tombstone is just going to read, "I TOLD you I was sick!"....sighhhhhh.....good times!" Ophelialit....this made me laugh. It's also somewhat sad...due to the fact that there are some times I totally feel like I might just drop dead...and people might think...."jeez, Tracy was right, something was more than off with her"

For me I get decent relief of SOB using 5MG of hydrocortisone, 3x/day. It's the only drug that I take and helps. I know there are some downfalls to steroids but for me right now the benefit far outweighs the risk until I can hopefully climb out of this 6 month slump. Also Zico coconut water helps a lot. Only plain - not flavored. Good luck. ~ Tracy

Dumb question: Regarding licorice....are people buying the candy?? Are people using the herb??? I'm sorry to have to ask ~ Tracy

I have low am BP, was 80/45 in up until March, lately has been in the 90's/50's sometimes get into 60's. I have diagnosed low blood volume. Salt does help me...I found that if I over do the water I think it taxes my kidneys and flushes the salt. I put 1/2 tsp of Celtic Sea salt in a baggie and try and get to it by mid am. I sprinkle it on food t/o the day etc.... I used Gatorade in the am and prior to sleep to try and provoke my BP to not drop while I sleep. I recently found ZICO which is coconut water which helps a lot!!! I take the BP once in the am just to guide me as to how much I should push the salt. I'm under the impression that it's like a replacement dose and I'm not really adding it???? Sort of like my body isn't making it or storing it so I'm replacing it??? I could be completely wrong. I feel like my salt/sodium intake is a big guessing game and never have 2 good days with the exact same dosage so I add symptomatically. Also now that I'm using ZICO more than Gatorade (to reduce unnecessary sugar/calories) I'm unsure of how much salt to eat as ZICO has quite a bit. Also I take 5MG of hydrocortisone 3x/day which seems to be my savior; the only drug I tolerate. I tried to go off of it once and slid very quickly backwards with every symptom.

Before I completely figured out I was POTS I was having what I thought was anxiety but also probably POTS symptoms. I knew I had a lot of fear when my symptoms were bad and a lot of wonder/anxiety about what was happening and how I was going to get better. I ended up making a playlist of music that felt like it was empowering, most songs had a memory for me of a very safe time in my life. I used some 70's songs from my childhood that made me remember my parents together, taking us kids camping. It was safe music - a time when I remembered feeling safe. Even though there were days that I could barely tolerate the sound of the TV or the light thru the window I would spend some time listening to the songs at volume tolerated and focus on the emotion. I imagined myself feeling safe, getting better; also reinforcing that I really didn't have an anxiety issue but I have a condition which put me virtually in charge of getting better alone. I reminded myself that I would not die from this and tried to feel my memory of safety and happiness in the music. I haven't tried any meds for my sadness, anxiety issues yet...at last Dr's visit he asked if I would like something to help me with my sadness. But I'm not ready yet. I try and celebrate small successes and stay focused on the belief that I will get better or figure out an acceptable quality of life for me. This forum has helped with that tremendously. Ultimately when I didn't have enough info I had put myself into a nuero re-training program and then found this forum to assist in pushing and empowering me thru. Work in progress. Good luck all Incidentally one of my songs: Never going back Again from the Rumours album Fleetwood Mac.