Ashelton80

So, I have the stomach virus for the first time in probably 10 years. How on earth am I supposed to stay hydrated like this? Anyone have experience dealing with this on top of their POTS?

So, I have the stomach virus for the first time in probably 10 years. How on earth am I supposed to stay hydrated like this? Anyone have experience dealing with this on top of their POTS?

Ok so I am really jealous that you have 2 within half an hour! I do have one about an hour and fifteen from me, but as with anything else not all dr's are created equal and I didn't like him. So 4 hours we drive. lol I am a bit biased though since the dr I see is the one that actually invented the technique. And yes he is really old! 83 to be exact and he still works 6 days a week! He is the best and well worth the drive. My first appointment there was a lady sitting in the waiting room who had flown in from Hawaii just to see him. She comes twice a year! So I guess my commute is a hop and skip compared to hers.

Wow Dianne, that sounds really scary!!! It was a nightmare for me as well. I told my husband I had never felt mentally unstable until I took that drug and I only took 2 doses. Bad news!

Sorry you are having a hard time, but at least it sounds like you've had some decent progress as well. As far as the chiro I feel like I have quite a bit of experience with this subject. For one, I am married to one, but started getting adjusted way before I even met or married him. I have been adjusted for about 9 years now with the diversified technique (manually) with no problem. When I started to develop POTS it seemed to be a catch 22 (is that right?) for me. I started to not feel like I was able to to "handle" the adjustment and not getting good results, but if I didn't get adjusted I was in so much pain. When I am in pain and feel like my spine is a wreck my heartrates are about 15 bpm higher. What to do? Well, about 2 months ago we just changed the technique. I now drive 4 hours to see an Atlas Orthogonal chiro. I had AMAZING results with this. It is a very specific and you are adjusted by an instrument that is the size of an ink pen. I honestly couldn't believe that something so gentle (you barely feel it) worked so well with my POTS symptoms. I walked around an entire week with heartrates in the 70's. That hasn't happened in well over a year. So, my suggestion would be to just use a different technique because yes anything too "forceful" can have a negative impact on me. I had a very intense accupressure massage and had one of the biggest crashes I have experienced afterwards. See if you can find an Atlas Orthogonal chiro anywhere near you. They are very hard to find as not many practice this technique. Hence the reason we drive 4 hours. Good luck and hope you get to feeling better.

I have POTS and do not have a bp drop. Am extremely hyper adrenergic by symptoms as I have never actually had the blood levels drawn. Before I knew I had POTS one of the first meds I tried was Zoloft. It is an ssri and is a little different than an snri. I took it for two days and knew right away that is was the wrong med for me. It made my symptoms increase 10 fold and was probably two of the worse days I have ever had. If you want to try I think if it effects you as negatively as it did me, you will know very quickly. I actually had alot of paradoxical reactions to the drug too. It is supposed to make you drowsy and I was up for 48 hours after I took those two doses. I would just weigh the pros and cons as those medicines are no joke. Why they hand them out like candy I will never understand.

I rented one on a month to month basis. Paying out of pocket.

Well since you can't control the germs your best bet is to strengthen your own immune system. Here is what works for me Follow an anti inflammatory diet....no sugar, no processed foods and limit grains to only quinoa etc. So I just mainly eat eggs, meat, veggies, some nuts and nut butters and alternatives to crackers such as Marys Gone Crackers with hummus, larabars are also good Green tea is good as well as Ginger wheatgrass turmeric these all have major anti inflammatory properties....I take a "powershot" everday it's wheatgrass, lemon, and Ginger juiced from whole foods Garlic has anti bacterial properties ...some people will swallow whole cloves like a pill ...I haven't tried this one yet but I might start soon! Pomegranate juice or any of the acai berry is high in antioxidants I also get adjusted by a chiropractor on a regular basis which helps strengthen the nervous and immune systems Also get plenty of sleep and drink lots of fluids Oh and very little dairy I know this seems like a lot but if you do these things it will help tremendously....I've experienced it firsthand. If I start to get sick I have usually slipped somewhere. Usually it's with soda . I do still treat myself though. It's not super fun sometimes to always be so health conscious, but it's worth it to me. One more thing if you practice some of this with your toddler it will also keep her from exposing you so much. I have a 3 yr old in preschool 3 days a week and it works like a charm. Good luck.

Where do you go and how do you get someone to prescribe the IV's? I have always wanted to do this at least every once in a while, but don't know how to get it accomplished. I know it makes me feel better as when I was in the ER after a week and a half of adrenaline surges and major tachycardia it immediately brought my heartrate down 20 bpm and I slept better that night than I had in weeks.

I am lying here today with a horrible sinus/upper respiratory infection due to allergies to the horrible ragweed counts in my area. Obviously I feel like crap, but there are a few other things I have noticed. My feet and hands are ice cold which is fairly normal for me, but it's like I have these hot spots in certain areas of my body. My neck, mid back and upper front thighs feel very feverish. It is so weird! Any one else experienced this before or know what is going on? Also, when my POTS symptoms are really flared my toenail and fingernail beds are completely purple! Is this a circulation problem a blood problem or an oxygen or all of the above?

Just curious if anyone has read all of the articles on Dr. Lam's website regarding Adrenal Fatigue/Exhaustion? My symptoms are almost word for word exactly as he maps them out. He also goes into detail about ANS dysregulation and a little on POTS. I have spoken to them before and I think I may give them a shot. I have already ordered all the supplements so I will let you all know how it goes and if I see any improvement. Let me know if you take the time to read some of his articles and what you guys think about it.

I think atlas orthogonal is superior to Nucca, but that is just my personal opinion. I have been adjusted for 8 years and was adjusted diversified (manually) I developed Pots and then I couldn't handle it anymore. Too stimulating. Btw my husband is a chiro and We travel 4 hours to Atlanta to see the dr that does atlas orthogonal. I had amazing results! Like walking around with my heart rates in 70's. Occipital pain and pressure relieved. Unfortunately Im still not holding well and obviously it's hard to travel all the time. If u can find one close to you I would highly recommend it. As far as Nucca I was only adjusted once so I really can't say much about it other than I couldn't tell it did anything compared to atlas orthogonal, but I would say give it a try as it's better than nothing. As far as the other testing you will just have to decide. I have had soooooo many dr's natural, alternative and conventional say they can help and I haven't found anything that has except for the ao doc. But I know I will never stop trying things to make me better. I would spend every last dime for more function. Good luck and let us know what u decide.

Well, to be quite honest and frank the answer to your question is I haven't found a way to be happy and sane with POTS. I hate that answer, but it is true. I don't know if I will ever be content with living my life this way. I still grasp on to a possible recovery as it's been about 18 months for me and only 4 months since diagnoses. I just told my husband eariler that quote "i'm running out of steam". I think the hardest part is people really have no clue! No clue that today I crawled on all fours up my staircase crying my eyes out because my heartrate was 130 and I couldn't breathe or stand the chest pain. I look at other moms taking there kids to preschool and watching them push their babies in swings and it is just more than my soul can handle. My daughter is 3 and I've been sick for 18 months...do the math. I watch people walk in and out of Target pushing buggies and talking at the same time and wonder how it got to the point where that simple human act looked so far fetched and painful. Over it. Period. Sorry this is not all rainbows and roses, but sometimes I just like to hear raw feelings. And to know I'm not the only one struggling and overwhelmed with the width and depth of this condition. Now tomorrow I may feel completely different, but today is a hard day for me as well. I guess knowing that even though no one else sees or seems to care, not one tear I have shed has gone unnoticed by my God and that He can handle my anger, grief etc. That is about all I can grasp onto on days like this.

Are you making any progress with any of those? The only thing that has helped me and at this point I feel like I've tried almost everything is seeing an atlas orthogonal chiropractor. And if this tells you anything my husband is a chiropractor and we drive 4 hours to see the one that specializes in atlas orthogonal and pay out of pocket for it too. Do you use just a regular physical therapist? I have thought about calling a local trainer and having him research my condition and have him come to my home, but I'm still afraid they won't understand that I am not a normal person and push me too hard. I tend to try to act tough and then fall apart later. I just wish the direction to take with this condition was more straightforward. My head just spins constantly trying to figure out how to help myself.

I will add that about 8 years ago when I first started to show symptoms of POTS (at the time I had no clue what was wrong with me, and neither did any dr) story of my life! Anyway, I had MAJOR digestion issues. Constipation (2 weeks without a bm) bloating, the pressure you are talking about where I felt as if I couldn't breathe. I had all kinds of symptoms, but this was by far the most bothersome. I also stopped having a cycle at age 23 during this time. I remember an obgyn looking at me and saying very nonchalantly "oh well you will just need fertility drugs when you want to get pregnant". I wanted to slap her face! This is when I started to lose repect for traditional medical dr's. She was not the only one who just didnt seem to get the WHOLE picture. Even at 23 I knew these were all connected somehow. I ended up focusing my care solely on the gut and guess what about 6 months later I felt great and my cycles returned to normal! I did take the medication zelnorm for about a month to get things moving. Lost 10 lbs in 2 weeks! Cut out all grains, sugars, etc. I only ate meat, veggies and a little fruit. I had colon hydrotherapy once a week for a while and took digestive enzymes and probiotics and took a wheat grass shot everyday. I couldn't believe the difference in such a short time frame!! Within 6 months almost everything had resolved. My energy levels, digestion, cycles, anxiety, depression. Everything gone! Now, this flare of POTS seems to be quite a bit different and much more severe. I actually don't have any digestion issues that I can tell. So things haven't been quite as easy to fix this time around after having 2 pregnancies. But maybe you could try some of the things that helped me back then if you are having trouble. Oh and dr tried to put me on Miralax and it did nothing. All this to say it wasn't until I took the matter into my own hands did I make any progress and I spent months going from dr to dr.

Thank you so much! I guess that makes sense because yes this morning when I tried to get out of the house I felt like I was on the verge of an anxiety attack the whole time. Just very jittery and not relaxed. I have taken zyrtec before so it's time to bring it out again.

So, I live in a place where people that have never had allergies in their life develop them. It is soooo bad and has been especially bad this year with all of the rain. I started sneezing last night and again this morning along with being stuffy. My heart rates have been so HIGH this morning. Just getting up is putting me at 135. Not normal. So I'm assuming this has something to do with the allergies. Why does this make the POTS stuff so much worse? Anyone know???

I have thought about doing the same thing. Having my perfectly healthy husband do the 24 hr saliva cortisol just to see what is says. I am always suspicious! I've gotten to where i don't trust anyone and don't think anybody really knows what they are doing. ugh One of the reasons I was suspicious is at the end of my test they needed me to fill out a survey basically giving them all of my symptoms. Why would they need this? If the test is accurate that's all they should need. If I decide to do it again I won't be filling out the survey. Of course as with everyone else all my levels of hormones came back extremely depressed including sex hormones. Thing is all of my blood tests and stim tests are normal and my montly cycles and spot on every month. I just don't get it! But yes I would think starting something serious like hydrocortisone should be used only if it was absolutely indicated and not just "suspicious" of adrenal fatigue.

Well I guess that goes to show you we are all different. The adrenal glandulars and the ssri's both actually caused adrenaline surges and made me much much worse. Oh my the 2 weeks I was on the glandulars I didn't eat, sleep, etc. Felt like I was on speed and then once I got off I completely crashed and couldn't get out of bed. It was horrible. Then the 2 days I was on zoloft was just as bad or maybe a little worse because add nausea to the list, but I learned my lesson and I don't put up with anything that makes me feel worse. The whole oh it will get better just give it time doesn't seem to apply to me. My body let's me know if it's not happy very quickly. haha At least it's helping you though. I haven't found much that does me. I just pulled myself off of a beta blocker after a week because it was bringing my heartrate down, but made me feel horrible!

In my case my morning levels were 25 which is higher than normal, but if you have a medical condition they are supposedly really really elevated. I did have a CT scan of my adrenals to rule all of that out and everything came back "normal". Supposedly, just from being so sick and stressed with POTS was causing my cortisol levels to be elevated. I was also having major adrenaline surges at the time.

Maggie, Where do you get this? I also had elevated cortisol levels right before we figured out I had POTS. The problem is most dr's want to give me something to rev my adrenals up to give me energy. I have tried that and it was miserable and made me much worse. When you say it "helped" you what exactly has it done for you? Thanks for any input. Ashley

If you had them as a child you should be fine! That's the beauty of natural immunity, now if you had been vaccinated as a child you would need to worry as they don't always provide lifelong immunity.

It's interesting that you mention this. I have always been convinced adrenals had something to do with all of this mess since alot of us develop POTS after a stressor or trauma. Add to that all the junk food, sleepless nights and constant lifestyle of toxins, tv, noise, etc and to me it's like a perfect storm for disaster. I read somewhere that we are exposed to more stimulation a day than people 60 years ago were exposed to in a year. I don't know how accurate that is, but there is definitely some truth to that. I just think there is still so much to learn about the endocrine system. It is so complex and many dr's only deal with one specific area of the body refusing to connect the dots at how our systems work in a harmonious balance to achieve health. All that to say, I have had my cortisol levels checked on multiple occassions along with an acth stim test. These all came back perfectly normal. So that's where you get into the "outside the box" thinking. My husband is a chiropractor and when he mentions my symptoms to any of the dr's and scientists at the conference's they immediately say it sounds adrenal related. I did try at one point adrenal glandulars and they made things much worse for me. Although I have never tried cortef (cortisol hormone). There is a girl on here I know that takes hydrocortisone that has POTS and it did not cure her, but again that doesn't mean it won't help you. Keep us updated on if you decide to try it. Too bad that dr. can't see you sooner than next year...that's just craziness!!

I will be having a full iron panel including ferritin at my next appointment as well. I have heard that even though you aren't anemic your ferritine or iron storage can be quite low and mean you are on the verge of being anemic it's just not showing up yet. I have also been told by a girl who has basically recovered from POTS that B12 shots can help build red blood cells. She said once she got her ferritin levels up and B12 shots along with some other things she felt much much better. That's pretty much all I have to add. That's great that your blood volume is not that bad!!