KLK1305

Tee601 I know just how you feel. I am one of those that gain weight when my symptoms are at my worse. Seems like everyone else loses around here. I don't know about how much you gain, but I gain roughly 30-40lbs at the onset of my symptoms. I stump my doctors with this because you would think I would gain overtime when I am sedentary. But I don't. I do keep it on though the entire time I am down. I normally drop the weight within 2wks of feeling better. But now this time around, I am doing better (I would say since the end of April) but have alot more symptoms that are still occuring than in the past so I have only lost about half the weight so far. From my experience I haven't found anything to help drop the weight while all my crazyness is happening which I know you probably don't wanna hear. Trust me I know how weight gain can just add to the sad/mad/frustrated feelings we already have. Not fitting in clothes and just watching your body expand is the worst feeling in the world. So I feel for ya. I have times when I struggle to just lift my head from a lying position without getting dizzy and fainting sometimes. Or to lay and try to get up from the chair or sofa or bed and have to just sit or lie back down. It just stinks (ha s*cks is not allowed lol). The one thing though this last time around I have learned from cardiac rehab & my doctor is even doing a little (just a mintue or two) of something is better than nothing. And you may have to just do something little for a minute or two for days or even weeks but you will be able to increase your time slowly but surely. And I guarantee if you do that you will start to feel a little better with yourself. Look into maybe cardiac rehab. You have nurses there that can monitor your heart rate and bp. And if you feel dizzy or faint they know what to do. Unlike going to a gym or the Y. And like Godsgal recommended do something sitting like NuStep, Rowing machine or the recumbent bike (though most POTS people love and can do the bike I was a freak of nature in the POTS world and would pass out on this lol) If you can't get out of the house or can't do rehab, invest in resistant bands. Or even use household items to use to lift. I even found that if I would prop myself up with pillows and got a medicine ball that I could squeeze in my stomach muscles while I threw the ball over my head to my mom. Just simple things like that will help. I hope some of this helps. Hang in there! Best of Luck

Thanks guys for all the responses I read them all on my way up to Toledo yesterday & was happy to find out this was more common than I thought. When I showed Dr. Grubb my last few blood work results he told me to not worry about it & that I just need to get in touch with an endocrinologist here at home to treat the hypothyroid (even though each test differs- one high, one normal, and two low). Said that more than likely treating just the thyroid will lower the cholesterol based on what he has seen with other patients. I am very happy to hear that cholesterol meds probably aren't going to be needed. Sallysblooms- I am not aware of them checking my hormone levels. I will have to look into that. Thanks songcanary! I'm glad to know I'm not the only one who was dumbfounded lol. And isn't Armour the one that is made up from animal?? MomtoGuliana I think that just shows that none of us have the typical symptoms of anything haha Like we don't need anything else more complicated. Doozlygirl I am on the low end of the "normal range" for my TSH & T3. But my t4 is on the high end (atleast on this last round of bloodwork) But my antibodies are what have been flagged on every single one. This time my TPO is 49, with normal being 0-34. I have been high everytime except once and I believe it was in the teens. I was also flagged for low neutrophils and high lymphs (which always happens when my epstein barr is flared up) since it indicated something viral. And my b12 was really low so i need to start on shots they said. Tammy do your doctors do anything beside just treat the thyroid, like cholesterol meds? Alicia thats me. I am all over the place lol Story of my life with everything. I think that with a lot of us here there are things that we have but don't necessarily present the symptoms everyday.

Hi guys! I did not realize that it had been since January that I have posted anything! Gosh time just flys by doesn't it? I figured it would be good to do an update since last time I posted I had just returned home from my first appointment @ the University of Toledo. My love of Toledo, Bev and Dr. Grubb are still as much as they were that first day (if not more now!) Since January I have been up there 2 more times, with my next appointment being tomorrow. They have been playing with my meds over these last few months. When I went up there I was only taking Zoloft & Florinef. Well at this very moment I am taking Welbutrin, Propanolol, Ritalin, & Provigil for short periods of time. Also add in there Axert, Percocet & few others I can't think of off the top of my head that I take when the symptoms appear. I am no longer bed ridden at this time (YAY) which is great. It's definitely nice to return to being able to get up and get around more and more on my own instead of relying each and everyday on my family. I am still having a few episodes a week but that is far better than having multiple ones a day. I of course still have frustrations & challenges everyday but I am ok with that :)I atleast can get out of the house, spend some time with friends outside of my house & feel somewhat normal. I have a question and hope maybe someone has experienced some of the same. I have been having bloodwork constantly since February. I have always had a prominent goiter but since all the potsy/ncs/cfs has been flaring up it has been going up and down in size and at times has been affecting my ability to swallow. My first round of blood work showed that I was hyperthyroidism. But what makes no sense is all of my symptoms are that of hypo (weight gain, puffy face, fatigue, constipation, etc) My last round of work, my doctor decided to run anything and everything he can. Well my cholesterol is off the charts!!! There were so many LDL & HDL particle things on the test that I am so confused. All i know is I am in great excess of normal in all of them. After doing some research I have seen that severe cases of hypothyroidism (Hashimoto's) have extremely high cholesterol. Has anyone else had any thyroid/cholesterol issues? My diet is good. I try to exercise when I have the energy. It just doesn't make sense to me. Any comments, ideas are welcome & I thank you in advance I just have been trying to research and I have completely freaked myself out with trying to take cholesterol meds to lower it because I have found that people with NCS pass out more due to the veins dilating even more (which I definitely do not need) I wish the best to all of you & hope that you are having more good than bad days. And if you are having nothing but bad days know that you are not alone. Just stay strong & keep your head up <3

Hi everyone!! It has been a few months since I have been on to post anything, and I now have the greatest thing to talk about. I'm sure many of you understand that it's just frustrating when the only thing you can talk about sometimes is the crappyness you feel, the frustration with doctors who just don't get it, and the wish to just feel normal again. When I was first diagnosed last summer I met a girl who was also diagnosed with POTS & NCS. She was one of the lucky ones who had been diagnosed very early on, had extremely knowledgeable doctors, and has had a lot of her symptoms managed for the last 5yrs. From September-December were absolutely horrible for me. It was extremely frustrating with my doctors at home who were only willing to try one thing and then give up and who were failing to even try to help me manage my migraines, stomach issues, & the long list of other things I was experiencing. Right before Thanksgiving, my new found friend told me that I needed to see her doctor. Who happend to be Dr. Blair Grubb. I called and was surprised to find that the orginal wait of 6months to a year to see him could actually be less if you go to see Beverly. She is the practitioner who is his right hand woman. I am one of those who is more than willing to see anyone, I could careless about the degree as long as they can help me and was more than happy to schedule an appointment with her. My appointment was yesterday. It was the most phenomenal, amazing, wonderful doctor visit I have had in the last ten years!!!! Words truly cannot describe the experience. Beverly is one of the kindest, most understanding healthcare providers I have ever met (and boy have I met alot). I was with her roughly two hours. I cannot explain how amazing it was to have a doctor tell me what I had and what I was experiencing. It wasn't me repeating I have this, this and that and have a dumbfounded look. SHE WAS TELLING ME!!! She went through a powerpoint and showed how things work, how they don't, and the ways to begin to try to manage it. I am one of those who have every single symptom imagineable (yay me! I like to say I am an overachiever lol) and when she shows the 14 main things that are accompanied with a POTS, NCS diagnosis, I present all 14 things. I cannot express the way it made me feel to have a doctor validate what I have been saying all along. And to be told I am not crazy or imagining things. They actually understand that it's not just heart rate and blood pressure. They get that it is a complete attack on the autonomic nervous system and that it affects everything in and around the hypothalamus. WHAT A BLESSING!!!! If you are able to travel to University of Toledo to go to their office I URGE you to do it!! They have the most amazing understanding of this and have studies and knowledge to prove it. They have such a compassion. She truly is sympathtic/empathetic to those like us. So in the last 24 hours, I have had the greatest experience..Was also diagnosed with Ehlers-Danlos (I always thought my flexible and contorting ways were just normal lol) which explains alot about why some of us are diagnosed with NCS..Was given a whole new round of meds (welbutrin, propranolol that I am starting this morning and hope that in the 5-6wks to come once I am weened off what I am on and fully on these new meds may help provide the much needed change I need to get my body going again)..And I have a great renowned hope that I am finally in the right hands. My next appt is with both Bev and Dr. Grubb in March. So with that, if you are able to go there DO IT!! Get your doctor to refer you and send your info. Call at the first of the month (on the 1st) and try to schedule an appointment. YOU WILL NOT REGRET IT!!!

Hi all! After finding this forum & reading several posts & seeing others diagnoses, I began doing a lot of research online. I really feel that I have underlying issues that could either be causing my POTS & NCS or making it far worse than what it could be. My problem is I do not know where to begin on approaching my team of doctors about trying to see other specialists and what tests to have. I absolutely love my cardiologist and neurologist here at home, though they are not very familiar with my conditions. I know that if I go to them with this they will be more than willing to refer me but I need a little bit more of an understanding to present to them the reasons I should go to an endocrinologist or a rheumatologist. So what I'm wondering is what experiences have you all had going to these other specialists and what tests did you have ran? Is there more to look at than just thyroid, cortisol levels and etc....I know this may seem really vague but I am hoping you can share some of your experiences with me and what other kind of testing you have had done outside of just cardiac and neuro (cause I really think I have had every test under the sun between those two). I'm just really at the end of my rope right now (symptoms everyday since August 4th...UGH!!!) and want to make sure I leave no stone unturned. Thank you and I appreciate any help

Many times after I pass out, when I come to I have a horrible headache and throw up or if I get one of my horrible headaches by itself I sometimes throw up as well. Doctors just told me it was due to the fluctuation in bp <Who knows> Maybe we should both check ours when we have one the next time and see what it is doing.

I think that I am experiencing some nasty side effects from Florinef. I have only been taking it for 3 weeks now, .1mg, 3x a week and I know that isn't alot. But within a few hours of taking it I am having bp spikes up around 130/79 (normal for me is 90/60ish) and my heart rate is going crazy. Then my tremors are being FAR worse than normal. When it starts doing this I have a headache around 10 on a scale of 1 to 10 and sweat profusely. I am going to the doctor tomorrow and hopefully we can figure something out. Also Friday7 if you go to NDRF.org there is a handbook for people like us. If you go to the treatment section it has a pretty good description of all the different meds that are used for treatments. Hope that helps some for you!

Chrissy, I am sending lots of hugs your way!!! I know EXACTLY how you feel. I too am a 23yo that has been self taught in school since 9-10th grade level and I also have pretty much been left to figuring a lot of things out on my own with these illnesses because I am always too complicated for doctors. I know how horrible and frustrated and overwhelmed you feel. Know that you are not alone. The feeling of being washed out both physically and mentally is so hard to handle sometimes. <HUGS> and hang in there! ~Krissy

My opinion is that there probably isn't a 100% recovery (though I definitely wish there was). I have to agree with Tearose that there are remissions and relapses. I myself have experienced this. I wasn't dx until this year, but all of my symptoms have been the same for almost 10 years now. I had symptoms everyday for 5 years, then nothing but maybe 15-20 "episodes" that just lasted a day or two for almost 4 years, and now this year I am pretty much back to where I began. I definitely believe that everyone is different, and what works for one probably won't work for another. I have personally only met, in person, one other girl with this and she is a few years older than me. And she told me that even though something may work for you now, doesn't mean it will work 2 years down the road. She explained that she has been switching meds recently because what they found to work for her a few years ago is no longer working. I am optimistic though that one day all of these dysautonomia specialists will come together and figure something out for all of us Wouldn't that be awesome?!

YAY! That is great!! It is so hard to find doctors that you actually like! They are sometimes few and far between!

Lieze: I see my cardiologist here at home on the 18th of this month. I have my one here at home and one at Cleveland. I definitely plan on talking to him about it and voicing my frustration. I honestlydon't even think the healthcare providers have a full understanding of "where this is going". I talked with my one nurse today about it (which still left me frustrated lol). The rehab place I go to has only had 3 other girls with this diagnoses, but we have all been entirely different. I think thats the biggest problem is what works for one doesn't necessarily mean it works for another. I honestly don't mind going most of the time even if there is no benefit because it atleast gets me out of the house and doing a little activity in a supervised environment. But days like today where I am told repeatedly my bp is normal (and looked at like I should be feeling good) irritate me. When I go they don't work me to the point of passing out either. After reading many peoples postson here (I am brand new to here) I think I am in an entirely different POTS category. I pass out no matter what, have bp drops no matter what, and ever changing heart rates no matter WHAT I am doing. It doesn't matter if I am up trying to move around or been laying in bed for 5days straight. Mine isn't necessarily all orthostatic intolerance like a lot of people I have seen. LOL I am a trooper. I try to do as much as I can activity wise (which really isn't alot right now) but I guess I am just willing to do anything and everything to try to figure things out and get my body back to somewhat normal feeling Oh and the day I passed out 3x I had actually stopped on the recumbent bike because I was 150/80 and literally felt high and like I smoked crack or something. I then laid down on the floor and began to steadily drop in bp. And I definitely did not continue to exercise after that, I went home and slept for 3 days because it killed me. Brye: I so give you and all the other Moms out there who have to deal with this and try to do family life, housekeeping and all the other motherly duties an amazing standing ovation and round of applause because I could not imagine!! It's very hard for me to tell if any of this is helping me or making me improve in some way. My symptoms are all over the place, literally changing hour by hour at this point. Some days I can do the three machines and other days I only do one (which hey I say is better than nothing lol) and some days I don't make it there at all. I literally live my life hour by hour (*****!!) I am currently doing the Nu-Step, recumbent bike, and treadmill (on the days I feel somewhat human). It's funny but I am actually passing out more on the recumbent bike lol granted my treadmill speed even on an okay day is only 1.4 lol But still it makes no sense to me and no one seems to be able to explain why I do this. I am very fourtunate that ever since this began I know when I am going to pass out so luckily I make it to the ground or a safe place before I do it. So no falling off machines for me..WOOHOO!! Heiferly: It's so funny that the recumbent bike is your friend because it's not mine!! lol. I am all over the place bp and hr wise that it really doesn't seem to matter what machine I am on. Like I said before thank goodness I have warning signs before passing out so that I don't have to worry about falling and all that. When I start my warning signs is when they are like "Krissy are you okay." But there are some days where they ask me that and later tell me my bp dropped suddenly or my hr skyrocketed and I feel fine and not fainty. I already think I am moving at snails pace but I am def going to try maybe doing a little warm up phase. I have not tried my stockings yet. My doctor kind of implied that they weren't necessary (my cleveland doctor prescribed them but the one down here didn't). I think I will go get them and try them out. POwerade zero? I will need to try that because I am G2'd out! So tired of it! Now to my bp being 90/60ish. That is what both cardiologists consider my normal because when I am in remission that is what I am always at. BUUUT when I am being POTsy it doesn't mean a thing. My target heart rate is 158 which I think is crazy because I feel like even more crap when it is in the 120-130's. Which brings me back to me being all over the place because some days I can be lying and doing nothing and go from 73 to 120something for no reason and my bp bottom out. When I get that high in bp and hr though I feel like i said before like I am high and on drugs. It's absolutely horrible. So I couldn't imagine getting around 160. TO YOU ALL: THANKS FOR UNDERSTANDING

PICKLES!!!! I love pickles!!

Okay.. I am so frustrated beyond belief and I have no one around me who understands and I know you all will. I have POTS/NCS. I am currently doing cardiac rehab 3x a week. I do three different machines @ 10minutes each (although it takes me over two hours to do that lol). I have been doing this for almost a month now. My doctor at Cleveland belives in it (though many doctors I have either talked to or seen comments online do not believe in it). I am not saying I necessarily believe in it or don't because I feel like crap no matter what I am doing. The nurses at my rehabilitation center are absolutely amazing and so kind to me, I could not be more greatful for that. BUT my problem is I am so tired of going in there 3x a week and hearing, "Oh well your blood pressure is normal. That's good" when I walk in looking like a zombie and feeling like the living dead and passing out every other time I am there. It's like after a month they still don't get that I don't have a "normal" blood pressure. I can walk in @ say 94/65ish and pass out. Or I start out at that reading then drop into a systolic reading of 60 and pass out (when you are supposed to go up in bp when you work out but mine drops).Or for instance like last Wednesday I started out at my 90/60ish, shot up to 150/80 and then broke my own record and passed out 3x in 45 minutes when I was coming down and then I stayed at 114/82 for almost 20 minutes then went down into a systolic reading of 90 and passed out again. And my heart rate is spastic as well. It can be in the 70's or 120's or not even register on a machine because its so low. I am just extrememly frustrated. I have been down since February (felt okay in July) and I guess it's just kind of all coming down on me right now. I am just really missing being a normal 23yo right now.

I take Seasonique (which is also where you only have a period every 3 months). It has really worked amazingly for me. I went through a ton of different ones since I was 14 trying to find one that has worked for me and my symptoms. Finally been on this for two years now and my POTS symptoms are not worse while on my period. Hope you find something that works for you.