hippychic258

I am just wondering if this is another Pots symptome I have had this happen before I was sick but didn't think anything of it my ears get red and itchy.

HI I am having weird hot flashes and surges and some itching afterwards, I know nothing about MCAS and was wondering what the symptoms are and how you get diagnosed and what helps? Does it cause Pots or does Pots cause it? Thanks

HI I am having weird hot flashes and surges and some itching afterwards, I know nothing about MCAS and was wondering what the symptoms are and how you get diagnosed and what helps? Thanks

I hope it is the Zoloft and it keeps working I have not been on any meds but if this works like that I want some!!!! Glad you are feeling better and keep us updated. What were all your symptoms before the Zoloft?

Is anyone else not able to listen to music or watch tv without getting sick it makes me shakey and just not feel good. Why and what can you do about it?

Pizza does the same thing to me.

My question is: How severe where the patients symptoms when they started the study? If I would of been in the study when I was diagnosed 3 years ago my results would of been the same as the patients in the study, I thought it was gone, but I am now bedridden and have been for 5 months. That is a very vague study, but at least its a study.

I am Headed to Texas July 30th to the Pots Treatment center making a 17 hour drive which will prob make me really sick but I am bedridden and have been since Feb and am not getting any better, so I have nothing to loose. If it can just get me to sit up in a wheelchair and get out of this bed I will be the happiest girl alive!! Never thought in my life I would ever say i would be happy to be n a wheelchair. This syndrome ***** the life right out of you and it *****!!!!!!!!

Does anyone have or ever had anxiety about walking, I am scared to get out of bed after 5 months due to anxiety and not knowing how my body will act standing and walking after all this time, so i find myself just waiting for all the symptoms to go away before i walk, well its not working the days have turned into weeks then to months, I think I am stuck here. Does anyone have any advice or had a similar situation? The last time took a few steps I thought I was going to die so obviously that scared me enough not to want to do it again. I am hoping I will just know when I can try again.

Anxiety, head pressure,dizziness, vibrating sensation, just feeling like something is bad is going to happen all of this and more which is keeping me from getting out of bed and walking. My anxiety is so bad I am afraid to walk. This syndrome has sucked the life out of me!!

I see a lot of you take licorice, what is that for?

Has anyone tried biofeedback treatment or heard anything about it?

Seeing how I am stuck in this flare up for 5 months now and I am completely bedridden, I am curious as to how many flare ups everyone has had and which one has been the worst for you and what all did you go through and for how long? Does this mean each flare up is going to get worse? For me this is my second bad flare up and this one is so much worse than the first one, I never had all the weird neurological symptoms with my first flare up like I have with this one.

Julie, were you ever bedridden?

I tried to find it on that link but its gone and who is he?

Thanks for the info, I don't think I have aura, I just have weird symptoms in my head, that drive me crazy.

when I was in the hospital my Doctor said I had clonus in both ankles but never said why and now it appears to be getting worse, maybe from not walking I am not sure. But just wondering if this is related to Pots or not and what it means. Thanks

Hi So sorry you are so sick, don't feel alone many have gone through what you are. It is scary not knowing what is wrong and having such extreme symptoms. I would keep calling your Dr. and find out the results of the test and if he doesn't help you keep going to other doctors until you get some answers. Many doctors are not familiar with Pots so find one that is and get testing to make sure there is no underlying condition causing this. I am bedridden and have been since March and I started out the same as you couldn't stay on my feet much until eventually I ended up in bed, now working to getting out of bed. The best thing you can do is find a Doctor who has experience with this. Start drinking lots of water that sometimes can help. Please keep us updated.

What are the symptoms of Migraine aura without the pain? What do you do to help the symptoms? Just wondering if I have this, When I sit up for longer than 1 minute I get head pressure, ear pressure, dizziness, blurry vision, brain fog, vision and noise sensiivity and it lasts for hours or until I go to sleep, but I have no head pain. The only time I have no symptoms is when I stay laying down (but propped up) and don't move very much. When this is happening my BP is fine as well as my heartrate. I really can't handle much more of this!!! Thanks

My sensations like these are back more towards the back of my neck. Is that what you are talking about or are you talking in the front of the neck?

Thanks everyone. I just am not sure I want to do the medication thing until last result. Do any of you get the one strong heart beat before your tachycardia? I feel like my heart rate gets really low and the strong beat before the tachycardia is my heart kicking in due to the low heart rate, but I could be wrong. Michelle: After being bedridden for that long were your legs really deconditioned? How long until you got your strength back? and where your symptoms worse when you first started getting around? Could you sit up at all? Were you able to get up yourself to go to the bathroom when you were bedridden? Sorry lots of questions.

Has anyone went through a bad flare up with Pots and got better without taking any medications? If so how bad was your flare up and how long were you on the meds?

Yes i can feel my heartbeat separate from the tremors, it scares me, I am wondering if it will get worse if I walk? I get so symptomatic when I just sit up I hope this gets beter so I can walk.

Thank You!!!!

I am bedridden and when I sit up for short periods of time ( because thats all I can stand) I am fine until I lay back down then I have inside tremours, shaking and head pressure. Does anyone else have this at all? I only sit for short times because the more or longer I do it the worse the symptoms are. I wonder if I tuff it out and stay up through the symptoms will they get really bad? Will this ever go away? I need my life back!