icesktr189

I really reccomened the LDN. It is truley awesome stuff for CFS. Unfortunately does nothing for POTS however (for me at least ) I have found treating CFS to be a lot easier than POTS. I don't feel mine are directly related. I cane down with POTS years before CFS. However I might have pulmonary arterial hypertension so maybe that's why I am exhausted. I did find treating the POTS helped tons with the fatigue. Do a Google search of ME/CFS

Oh forgot to add that horrible fatigue, sore throats, swollen lymphnoids, and fevers were my symptoms

Hi there! Are you talking about the symptom or the syndrome? The syndrome itself has a lot more symptoms than just chronic fatigue and is a seperate diagnosis. I got mine about three years after pOTS. Mine is from chronic EBV. I have used anti vitals and coq10. Also use LDN. Just need to work up to a theraputic dose. Also anti depressants have helped my fatigue and dizziness in the past. Sorry if you already knew the differences, there are many people who don't. good luck hope you find relief soon!

I get the same thing and I'm definetely not near menopause (I'm 21)

Let me know how it goes and if it helps! Mine was a new infection I had when I was. 7 months pregnant. If I over due it or get run down, I get fevers and sore throats. I feel that the EBV is causing my POTS flare. Ugh yes! Still looking to see if I have PAH. One doctor is passing it off saying that it was an echo, so it could have just been mildly hypertensive that one time. Obviously I hope it is, but I'm not going to take a chance so I'm finding a new doctor. (Ugh never ending process! Lol) I forgot to mention looking into grapefruit seed extract while you are waiting for your anti vitals. The stuff is awesome for viruses. BUT just a warning .... go VERY slow with anti vitals and the GSE... you will have the die off period, and I felt like death the first couple weeks. Turned into a POTS flare. Good luck! Just because it did not cure me, I am much better than I was before. Also look into LDN. I know tons of CFS patients that it worked wonders for! And thank you!

Thank you everyone! They want me to see an appointed cardiologist so hopefully in a month or so. *fingers crossed*

Hi lovebug! You said you are taking celexa? When starting at 2 mg did you have symptoms? I have the 10 mg pills and plan to break them in fourths. I asked the pharmacy for liquid, but they said my doctor needed to write that. Just really nervous about starting.

Hi there! I had 2 postive tests for EBV this year and part of last. I think that turn my POTS into a flare. Unfortunately I tried the anti virals meds and I still have CFS. One was valtrex and I forgot the others name. They did help in the beginning with the sore throats and swollen lymphnodes, but did nothing for the fatigue and dizziness. I hope they do more for you! My doctor told me the best time to take them is in the very beginning of EBV.

My disability case is going pretty good. I have traded cardiologists to a new one I really like. He is very knowledgable about POTS. Only problem is that he seems to believe that because I am 21 I WILL grow out of it. Dont get me wrong, that would be a miracle to and I would gladly hope for it. HOwever, I have had POTS for 3 plus years and it seems to be getting worse. My parents do not support me, and I have a daughter to support finacially. We are at the point where I need to either start working or make some kind of income. I cannot work. let alone drive a car. I just dont want him to come out and say I will out grow this because he cant be positive I will. I know there are a few that do, but I also know there are many who never out grow POTS, even when they came down with it at a young age. Any advise?

Thank everyone! I have looked into candida, but I think mine is more POTS/severe allergies. Did they do a stool test? The diet is soo strict, and Im already underweight, so I am wary of starting it. I do want to eat healthy, but dont want to loose anymore weight :/

ev Lieze- Im not sure what kind of POTS you have, but are for certain it was an allergic reaction? I am asking because my POTS sounds a lot like yours. I notice you have tons of adrenaline surges like mine also. When mine is bad, I cannot eat anything without surges. Seriously even drinking water right now, I will have a surge, feel ice cold, then get very warm and nauseous. Then it will turn into hart palpitaions and I will then get panicky. For this reason, I generally loose tons of weight because i hate eating when I am like this. Your ANS seems like its way overactive. Mine is also and until you can slow it down, it will react to everything you eat. Good luck I know how horrible it is :[

Sorry I posted this a billion times I'm stuck on the internet immune phone lol. I just need a new route other than taking a nap because its happening so often now. I have tried tons of salt and gateraide to no avail.

Sometimes I'm so lightheaded and dizzy that I can't focus eyes to the point I feel drunk. The only thing that helps is for me to take a nap. No matter how much salt or liquids I take in, they don't help. Anyone else?

I agree it hits in clusters but it can be caused by so many things. I know for sure mine is genetic.. my grandma had exact symptoms of pots (they just diagnosed her with anxiety) my mother has tons of autoimmune issues. I had very small symptoms growing up, but it was not until my drug use did I fully come down with this.

I just filled my prescription for my celexa and klonopin. I will start them next week. Been having adrenaline surges that last all-day and night. I wake up in the middle of the night so dizzy and out of it almost like nothing seems real. Also very sensitive to light right now. I have been through this once before and hoped I would never have to again.... Last time I started on a full dose of lexapro and it was horrid the first couple weeks. So many surges and panic symptoms and I felt like my skin was crawling. If someone could tell me the symptoms they experienced it would help a lot I will start on 2.5 mg and slowly work up. I'm still super nervous and have such a fear of new medications, but I can't live like this anymore. Any encouraging words would help.. its going to take a miracle for me to swallow the pills. Actually thought of taking them in the hospital parking lot lol

I took lexapro years ago when I first came down with pots. They thought it was anxiety. I took the full ten milligrams and the first couple weeks were horrible. After that it worked great and I got off six months later. I did great with pots until after birth.now I have adrenaline surges all the time. I have celexa.. has anyone tried that for pots? If so please tell me your experience

Have you tried the anti depressant yet? If not, i really think you should give it a go. I used to feel exactly how you did, and it was anxiety mixed with POTS. I am in no way downplaying your POTS, but its common to build phobias and anxiety when you feel rotten for so long. You will be so suprised after a few weeks on the antidepressant to find yourself a lot more calm and not having your ANS over react to everything. I cannot tolerate midodrine by its self, but i do perfectly fine on it when im on Lexapro. Good luck I hope you start feeling better :] Oh also, when you have anxiety for that long especially with adrenaline surges, you will loose tons of weight. I am 5'9'' and got down to 113 pounds at one time and was hospitalized. Being underweight will aggrevate POTS so much.

Thank you Julie, I am trying not to over worry until I get back into my doctor right now. Have you had additional testing done yet or are you still waiting for your results? Im not really sure how to read my echo, but I want to find my pressure rating for my right side. Thank you tons, I hope you find answers soon. Ill let you know how it goes monday

Thank you tons Julie for posting that, it means a lot. I just cant understand why my cardiologist never said anything to me. Its been a month since I had the echo done. My symptoms started about 4 months after I gave birth. Right now I have chest pains, shortness of breathe and dizziness. Those are my main symptoms. I hope that the dx was wrong though :[ Is this disease always fatal? I am 21 right now so im hoping that I can find something that will help me. Sorry this is short, the drive to my doctors knocked me out. I will come back and post more after I take a nap :]

I got my records back today from my cardiologist for my disability case. It shows that I have mild pulmonary arterial hypertension and mild tricuspid regurgitation. Should I be worried about these?? sorry for not writing more I am exhausted right now.

I havent tried any other benzo than klonopin. Its the only drug I can take that will help with my drug sensitivities. My doctor thinks its because it slows down my ANS so when i do try a new medication, it wont over react. I dont have to take the klonopin every time after, just the first couple times of taking a new medication.

For the past week I have been having episode of feeling very "off" then my blood pressure will drop a bit (down to 90/60) then immediately i will get stomach cramps and have pretty bad diarrhea. When this happens, my hands and feet start to burn very bad and I usually start passing out. I dont know if I should treat the blood pressure issue, or the diarrhea? (sorry TMI) This stomach cramps are pretty horrible too and they just started. Its not my time of the month either.

Those all sound like POTS! Right now I am in a relapse and have all those symptoms and bed bound. But good news is that with the right medications and slow, mild exercise you can start to feel a bit more human. Get yourself into a knowledgeable doctor as soon as you can. Just because they are a cardiologist or neurologist, does not mean they know about POTS or OI You sound like you are having blood pressure swings which are very common with POTS. Hope you start to feel better and just know that most of these people on dinet know more about POTS than most doctors! LOL

I have the same problem, but you have to understand its your body over reacting to the drugs. i do this with EVERYTHING i take. NO joke, even the simplest of meds, i have to have a small does of klonopin. Your body has to get used to the drug. A couple years ago when i first came down with POTS, i took Zoloft. When the drug kicked in, i was on the floor shaking so bad, feeling like i was dying. I took a klonopin and felt a bit better. BUT i stuck it out, and Zoloft ending up helping my POTS so much. Dont give up on the first try, and always have a benzo on hand. Once the therapy of Zoloft kicked in (took about a good month) i was finally able to tolerate pills much better. Right now i cant even take an allergy medication until i get some more klonopin beacuse my body will over react to it. You most likely have the hyper for of POTS.

Hi! So does it make you jittery? I have really bad adrenaline surges at the moment so that is why im worried. I will ask my doctor, but I dont have an appointment until next week and my allergies are out of this world right now.