Mytwogirlsrox

Thanks guys! I really appreciate the support, this is all so scary and new for me.

I hate to be a little baby right now, but I'm so mad at the fact that I have POTS! Life is not fair sometimes.... I know pots is small potatoes, but still its my sour lemon and I'm having a pitty party

Thanks Bren! I've had pots since FEB, so this is all still new for me.

Thanks Kim, this isn't what my POTS has been like. I sometimes get inappropriate adrenaline rushes but nothing like this its so terrible feeling. I just don't understand why it happens when I lay down also? Is my pots changing? I'm so scared... I just keep crying I thought I was okay, getting better etc...

I've been doing great.. Running, doing well over all. Today however, I went to the gym started walking on the treadmill, then started to feel like I was going to throw up, them my HT went from 110 to 140, I felt all numb and tingling then pre-syncopal. I went and laid down but HR was still elevated 120s laying down. I managed to get home from the gym, but now I feel like crap.. I keep having adrenaline surges even while laying Down, shortness of breath, nausea, shakey.... My vitals are pretty normal now 74 laying BP is 100/80 ... But I feel terrible!!! This is the worst ive ever felt since being diagnosed!! Any advise?? I took a Xanax and I'm drinking lots of water.. I have this horrible lump in my throat I'm scared, should I go to the ER? Is this what POTS REALLY IS?

There was further research, and from whats published it looks like these twins have a particular mutation that caused their POtS. However the same gene was not found in a population of POTS patients. Let me see if I can find the study I read. The new studies more recently published are talking about another mutation?/gene? that is causing a NET deficiency. Here is the study showing the twins mutation not likely causing other peoples POtS:

http://www.ncbi.nlm.nih.gov/m/pubmed/12589229/?i=3&from=/15699447/related

Hypertensive all the time or just while standing?

Hippy-- do you have anyone in your family or friends to help be your health advocate? Like someone who is knowledgeable go with you to Dr appts and help push for better care etc? It really makes me feel bad that you are bedridden. I don't know what your situation is with your Drs, but It sounds like you need someone who can help manage your care. I've never been bedridden, so I can't advise you on how to get out of bed. But I'm super familiar with anxiety. An SSRI really helped me overcome soooo many fears that POTS created in me like driving, shopping, carrying my babies, exercising etc... Once I got a grip on my anxiety, I started to feel better about those situations! Its now been 6 months and I'm 95% functioning normally. Are you on any medications? I know for a lot of us POTsys it takes meds to get us up and functioning. Have you inquired about cardiac rehab with your Cardiologist? Florinef? Beta blockers? Mididrone? Anything that can help stabilize you?

Been constant since feb this year. I don't think mine waxes and wanes. I think I'm getting better

In sorry your here, but you'll find so much info here

I know there are people on the board who have similar experiences with alcohol. Hopefully you'll get some great responses

I can totally relate to symptom checking causing symptoms, checking your BP caused you to be faint? I do that a lot, in fact I don't know how long I've had pots or anything because I never noticed I had tachycardia... I went to the Dr for anxiety left diagnosed with Pots. I have really struggled to get past my emotions affecting the physical symptoms. I try not to check my vitals now. I do more of a " how do I feel.. Okay... Then I'm fine for now" kinda thing.

Anyway glad you stumbled across Dinet, it's a great resource

I want to be one of the 30%

Hey Shannon,

Celexa has done pretty much the same for me I'm so glad you've found something that works for you!

Hippy-- I can really relate to you. My anxiety has been my worst symptom, I can remember when I was in the hospital for a week, I wouldn't get out of bed b/c my hr would shoot up to 140! I was so scared, and although my hr didn't exactly bother me.. My mind got carried away, I worried worried

That if I pushed myself I would end up having a heart attack or something crazy! I understand fear and anxiety can be so disabling. I started and SSRI and that pulled me out of my hole. It helped a lot with my symptoms too.. My HR is slower, I don't worry so much, my blood pressure doesnt fluctuate etc. I really think its all about baby steps and confidence also. I was scared to carry my babies or walk up to get the mail, but little victories made me see that I would be okay.. Slowly but surely I have worked up to running at the gym hopefully you'll be feeling well enough to create your own victories! Good luck

Relax-- did you love Zac BB? I saw him a couple months ago in San Diego!! They were amazing

Yes, I have had many ultra sounds of the veins in my legs. Only thing they found is that my greater saphenous vein valves are blown out = varicose veins.

I found my SSRI very helpful with my symptoms. In fact I recently weaned off celexa (lexapros cousin?) and found my symptoms returned. I started back on it, but now I know for sure that it was helping me

I have low liver enzymes...

Ha ha ha I hear you! I just really admire the military, strong an courageous AND they too can have orthostatic intolerance and continue to work. it's inspirational.

This is interesting too

http://www.ncbi.nlm.nih.gov/m/pubmed/12589229/?i=3&from=/15699447/related

Orthostatic intolerance is not necessarily related to a specific mutation (Ala457Pro) in the human norepinephrine transporter gene.

These were military guys too

http://www.ncbi.nlm.nih.gov/m/pubmed/15699447/

I just brought this up on a different thread, but it's pretty similar to Levines study (I'm generalizing, obviously it's not specific to POTs and it's running not rowing etc) but it has 63% success rate with a jogging regiment.

No word from any of the researchers/docs. I'm thinking they aren't going to get back to me on this. Where should I go from here?

There has to be more to it. I re-read the one study where some of the family members with A457P did not have POTS and it did not test their NET function. It just tested their supine NE, BP, HR and compared it to standing NE, BP, HR....

I started looking up some of the other people who share this rare allele with me on GEDmatch.com and according to some of these people's FB pages, they look very healthy. Now I look healthy too, so this is not a good way to screen. But one guy was in the military. There is no way a POTSy could be in the military.

Dana I jus wanted to comment on you saying "there is no way a potsy could be in the military" . I just wanted to direct you to this study

http://www.ncbi.nlm.nih.gov/m/pubmed/15699447/

I'm a military dependent and my Cardiologist is Active duty, he said he would put me back to work now. Generally he would have me out for 6 months to try and stabilize me, and now that I'm stable he said if I were AD I would be back to regular duties. He was NOT impressed with POtS. He said he was pretty familiar it.

Sorry totally random

Funny you posted this.. I had dental work done today for the first time in 5 years. I have a mini-anxiety attack (adrenaline rush, tingling, tight throat, pre-syncopal feeling) that came and went when the Dr was getting ready to work. BUT I truly believe my experience with POTS has given me Health anxiety. Did you know that anxiety causes all kinda of crazy physical symptoms.. Numbness and tingling are some of the symptoms.. If your Dr has ruled out all the medical causes, do you think it could just be nerves? The dentist gives me the worse nerves!! Hence why I haven't been in years lol

Jangle-- what would be the opposite?

Issie-- sorta, SSRIs and SNRIs inhibit the reuptake so there is more floating around extracellularly-- in the synaptic cleft, So the post-synaptic neuron has an increased binding capacity.

SO if this is the case, NET defiency, wouldn't people who use SNRIs have pots symptoms?

Selective Norepinephrine Reuptake Inhibition as a Human Model of Orthostatic Intolerance

http://circ.ahajourn.../105/3/347.full

Just curious if this means that SNRIs would help then?

Congrats!

Your one lucky guy, I'm so glad you returned to share your wonderful news with us, and give us all hope.

Thanks all for the answers!

I'm really hope that it's true meds can reset my system. All I know for now is that it's working, no I just wish my body was working better ha ha ha .

Thanks though for the support and responses