Lemons2lemonade

I wonder if it is the fact that we are relying on our adrenal glands to perform at these levels..just an idea...

Altruism, I know exactly where you are because i have been there. My first night off benzos made pots seem like a cakewalk. I tried SSRI's twice before i finally gave them a real chance. In my opinon, give the SSRI time. The benefits are slowly achieved but far reaching. IMHO i wish i had never taken the benzo. I thought it was helping me but it wasn't. It got me through, yes, i will admit that, but it did nothing to help me with my recovery in the long run. By the way, i am so proud of you for kicking them and giving the SSRI a shot. That takes a lot of courage and you can do it!!!!

Hi All! I am doing great! I got so lucky and scored a work from home job that is legit and right on path with my career goals. Working 8 hrs. upright, even in the shape i am in now, is really tough. It was random and fate finally turned my way. As for pots, it no longer controls my life. It is more of just a nuisance now than anything (wow, i never thought i would have been saying that a few years ago). I can do what i want when i want and that feeling is so empowering. I remember each and every day how lucky i am. The trick to me overcoming this disease was medication ( i take florinef, citalopram, and potassium.. this cocktail was formed upon a trial and error basis and finding the right medication is challenging and is going to be a rough time--i will not lie--but it is a necessary evil--IMHO benzos are not a reliable part of that cocktail) and also a challenge towards my mind. I took to heart patience, persistence, and courage--and those things have carried me to unbelieveable places. It is almost weird for me to read this post and remember feeling that way because i eat in restaurants and walk wherever i please all the time with no qualms. Nothing makes me happier than to hear that this post has inspired others. With my pots, every day is a push. And the moment i stop pushing, i fall back. But just remember the best things come with time. I remember a day when walking 15 feet was like running 5 miles. Yesterday, i walked around the block twice with my boyfriend, rode for 20 minutes on the bike, and ran a ton of errands.I am trying to do more on the bike to make my sympotms even better, but am working on the discipline. The best advice i can give from my experience is push when you can in small amounts til you become stronger and when your symptoms come in hard, give your body a break. The reality is, that it is not functioning properly and sometimes needs to rest--and rest is relaxation or sleep...not freaking out about the maybes and possiblys while your heart is beating through the roof. It is small steps to recovery and requires a lot of discipline and patience. But man oh man, has it paid off for me in the end.

That is such a great question and i think they fall hand in hand. Anxiety feeds pots and pots feeds anxiety. Breaking the loop helped for me

I tolerate it ok too. Just make sure you have a few days to recover. Hangovers last a lot longer with pots.

Tylenol does the trick for me. I guess i am lucky...

Hi All, I am actually doing quite well despite my poem post. It was mostly just me venting. And while i am venting, i would love to talk about how benzos DID NOT HELP ME. Sure, they took the edge off at the time. But the side effects and the withdrawal symptoms crossed over my pots so much that i had a difficult time determining which was which. Once i stopped the benzos, i got a much better grasp on things. For me the SSRI did so much more than the benzo ever did with time and patience.

sometimes they have a better idea on medications to use...at least that is what happened with me.

Dizzy Dame, I think you can fight this relapse if you can find a way to distance yourself from the stress that is going on in your life. Do not give up that easy! And do not worry about what you can not control. It will do nothing for you.

Misery knows no bounds. My suffering follows me every where i go. Like a quiet demon upon my shoulder--taunting, taking, festering. Waiting at any moment to overcome me. The fear within me is endless. Want to run but there is not breath. Want to live but there is no blood. Just enough but never enough. Walking the line to fall at any moment unexpectedly. Nothing is concrete and the world moves around me. Sometimes slow sometimes fast. Sometimes crooked sometimes straight. Just enough to remind me of the reality i so dearly miss. Hardly alive clinging to this wretched existence. Trying to stay calm but can not. Trying to breathe but there is no air. And the drum keeps pounding Harder, faster, harder, faster until i have no choice but to succumb. Surrounded by a sea of chaos with no beacon to guide me. My ship is empty and i am a lone sailor in the dark night. A warm feeling all around me draws me near yet far away at the same time. The only choice i have is acceptance for my fate. And that is my only sanctuary of control. Into this deep abyss i can not help but fall deeper and deeper.

sometimes i suspect that i had an untreated concussion that caused my pots. I fell 30 feet from a chair lift and was knocked unconscious...pots showed up one night within the week. Sat dormant for 2 years, took over my life, and currently is quieting down.

yes, that explanation of air starved despite breathing is something i get too when i lie down every night. I know what you mean about the chest spasms too, mine feel like a rubber band wiggling if you pulled it taught and then played on it like a guitar.

I suspect he means sodium chloride, sodium by itself is explosive! ~

Potassium levels are checked by blood tests. It is good medical practice to do periodic potassium tests while on florinef because the medication causes you to flush out potassium in urine. I take a lot of potassium and i am on .2 mg of florinef.

Unfortunately, your doctor experience is one that i think we can all sympathize with you on. If the doctor is not willing to help you, you can always request a new one and work from there if possible. There is an important component to your question though that i believe needs to be addressed. In the sense that doctor's use "anxiety" and "psychological" issues as a cop out, they are neglecting that there is something physical going on in your body that you have little to no control over. On the other side of the fence, keeping anxiety levels low and avoiding stress makes my pots symptoms less prominent. So is there a psychological part to pots? I would say yes. Is it the 100% cause of symptoms that most ignorant doctors suspect--no. For me i would say psychological aspects play about 20% into the disease. So for me it is important to maintain a healthy psyche, but no amount of saying "calm down" to myself could ever do what my medication does.

Before i got on the right medication regime i could hardly walk 50 feet. The day before yesterday, i was on my feet walking around in a museum for 2 hours. Walking is hard, and difficulty depends on the day, but mostly walking is not a problem for me anymore.

Florinef did not start working for me until i took .2 mg. Compression stockings also just seem to make me level out--not create a dramatic rise in blood pressure. Have you talked to your doctor about the possibility of adding an ssri or beta blocker into the mix? The down side is more medication dependence, the upside may be a possibility to reduce your symptoms. I hope you start to feel better soon, i have had those heart rates though mine seemed to top out at 160. If you and your doc do decide to use a beta blocker, be sure to research the different types to find out which one may be the best fit for you. There are tons of different types out there. A non selective beta blocker might be worth you tiime to do some research into. One more thing about exercise: i think when we think of exercise we think of going for a jog or hitting the gym. I can tell you when i started exercising that was not possible. For me it was getting up and walking to the bathroom at one point, and before that simply flexing my legs while laying down (that was all i could do). Sometimes it was standing for 30 seconds and sitting back down. I believe that exercise with pots is an individualized thing: where some people maybe can only stand and sit back down, others are walking around the house and some are jogging--in my opinion it all depends on the person and where they are. I have also learned that overdoing it doesn't help. If i exercise too rigorously its one step forward and two steps back with fatigue etc. symptoms.

I get this too only not the scratchy throat like a cold but the aches and weakness like the flu, but no flu ever comes. Sometimes i think it is just a phase in the repeating cycle of this disease for me.

Sorry for all of the topics, have a lot on my mind and trying to get it all out. Wanted to keep different threads to separate the conversations. Is anyone else here afraid to sleep? If so, why? And what symptoms specifically before you are going to sleep bother you if any? Thanks everyone, I hope you all are staying strong out there and doing the best that you can under the circumstances. Lots of hugs! -Lemons

*tachycardia

I have noticed that if i am feeling short of breath/weak/ lightheaded that if i take a nap, i wake up feeling much better than when i go to sleep. If i just lay down for the equivalent amount of time, it does not seem to help as much as actually sleeping. Does this happen to anyone else?

Since I have been on Florinef, my episodes of tachycardia are almost completely gone. I do get mild attacks periodically but nothing like before. Nonetheless, i still get presyncope type feelings. Does anyone else get these feelings in the absence of tachycardia?

I grew up with a wood stove, seeing if anyone else did.There has got to be some sort of commonality in all of us, i will keep searching!

I take florinef and it has helped me more with heart rate than with lightheadedness. However, though i am lightheaded, it doesn't necessarily feel like i am going to pass out. Additionally, i take .2 mg of florinef and it hasn't raised my blood pressure very much. Like you, I can also feel potsy when my bp is fine. For me though, i can even feel that way when my bp, hr, and o2 are fine...

I had pneumonia and was using dayquil/nyquil for almost a month.