sfr100

Thanks for the replies. I've been on on e smaller dose for 2 months and the mg were doubled for 2 weeks of celexa. I also take klonopin for sleep but was taking that before the rocking/floating symptoms. Any ideas? Susan

Hi I haven't posted in awhile. I have a constant rocking motion in my head and chest area that never leaves. It makes me off balance like i'm floating when I'm walking. I was wondering if anyone has experienced this and if anything helps. It never goes away so it isn't intermittant. Susan They're tryig an SSRI but its not helping

Thanks! The cardiologist has me scheduled for a stress echo next month.

Susan

Does anyone know if there is a medical/autonomic test to tell just how much your arteries and veins are vasodilating? My heart doesn't feel like it did when I first got diagnosed w/POTS 10 years ago. It beat real hard then so everything now feels like the blood isn't being pushed up enough? Any ideas? Thanks!

Has any one gone to the Mayo emergency room during a bad spell and then did different testing at the clinic? Thanks for any input.

Hi! I was wondering what others dizziness/lightheadedness feels like? Does anyone have the sensation, especially when laying down, that your head is rocking or that waves are rushing through your head in addition to that can't think lightheadedness when upright. I know that in some articles they say that symptoms resove upon laying down but I haven't found that to be the case. Or is this due to a high resting heart rate too? Susan

H!! can anyone tell me whose used clonodine if it is helping w/ Heart rate and Blood Pressure swings so that your HR doesn't swing up and down as much? If its helped you stabalize these swings? Thanks

Has anyone been taken off all meds and then started "over" to see what works when they are going through a really rough patch, too see where your body's at and what it needs? Thanks for any responses. Susan

Oll,

That wasn't too confusing. Thanks! I was trying to do some orthostatics for my EP appt this week. Your right in that it doesn't seem to correlate, at least for me with how I feel. I'm not a fainter, except on TTT but I have awful synptoms that don't seem to correlate w/ the orthostatic tests looking better or worse. Thanks

Hi! I know people have just posted about orthostatic vitals but I have a question. Despite having a TTT that showed pots (30 BPM in 10 minutes over resting HR) 4 months ago, does anyone ever do bp and HR numbers lying and standing that come out w/ your HR lower than the 30 BPM in 10 minutes of standing? What is this about? Any input would be greatly appreciated. Thanks!

WOW! What a great achievement! Congrats! Susan

Hi! Does anybody know the answer to this? In order to try procrit do your hematocrit #s from the CBC blood test and RBC have to be low or can they be in the normal range. Isn't low blood volume which the procrit is supposed to help something different from these numbers. Any input would be appreciated. Thanks

Hi! I just wanted to ask if anybody else also experiences this feeling. Where you are shaky feeling inside but along w/ lightheadedness that you are having an out of body feeling - that you are not grounded at all and there is this feelling of movement inside your body trying to get out. I don't know if I have explained this but I would like to know if others experience something similar. Thanks for any comments. I feel I am all alone in this feeling. It is far more disturbing than lightheadedness.

Anyone know of a relationship between pots and scoliosis?

Hi! I would like any comments about some information I was reading from a paper by Dr, Robertson. It explains about genetic or acquired deficits in the norepinephrine transporter and might explain why some of us with extra adrenaline may not do well on ssri and norepinephrine reuptake inhibitors. Any comments feedback will be appreciated. Here are some excerpt from the paper.

NOREPINEPHRINE NE plays an important role in human physiology.....NE also exerts central control over the....autonomic nervous system. More than 1/2 of amy interindividual variation in plasma NE appears to be caused by undefined genetic factors.

NOREPINEPHRINE TRANSPORTER Ruptake of NE by the NET protein is the primary mechanism by which the biological effects of NE in the synapse are terminated. Approximately 70-90% of the NE released into many synapses is cleared by this mechanism and the remaing 10-30% spills over into circulation. The inactivation process through NET is EXTREMELE IMPORTANT to prevent excessive increase of the NE concentration...and to limit its actions. ...Thus any impairment in NET would markedly increase the NE concentrations... Reuptake of NE is competitive with a variety of drugs...and antidepressants(mentioned buproprion) block the transport of NE and result in an elevation of the synaptic concentrations of NE and potentiation of the activation of synaptic receptors. Recent evidence has shown that treatments with drugs that alter noradrenergenic transmission can cause up- or downregulation of the NET which causes changes in the sensitivity to endogenous catecholemines."

I've been discusiing this with another member who also does poorly on these type of drugs, This may be an explanation that goes along with what the Baker Institute is saying -NET DEFECT- explanation for why in those of us that SSRIs and norepinephrine reuptake inhibitors make worse. Is upping blood volume and vasoconstrictors the answer for adrenergenic types that can't use these other drugs? Comments and insights would be appreciated, Susan

Hi. I saw on a post when doing a search that there is a paper floating around about procrit helping w/ Pots. I was wondering where I could find it to show my Doctor. If anyone has or knows about it please post or pm me. I hope everyone out there on it is doing better! Thanks. Susan

Melissa,

Sounds like a fun outing! Thanks for sharing that clip. Susan

How many have been to a study or appointment at vanderbilt and what have your experiences been. When they did the med trial did you find something that helped you function better. Thanks for any input. Susan

Can any symptoms be helped if your adrenals aren't working properly. My dr was going to order a test for cortisol levels. Would that be any information that would be useful to know. Thanks

I know many people have posted about shallow breathing or rapid breathing.....but I have another question. I had by sat levels measured and they were different lying down and then when I got up and was walking, The sat levels dropped when walking. Does anyone beside me think their symptoms would be improved if they could get more oxygen into their bodies? Thanks for any responses.

Susan

Has anyone taken an antiarrythmia drug to help with the flip/flop of heart beats? susan

I'd like to know if anyone has experienced bad side effects at first where you felt it was making your pots worse but after you stuck with it you got better. I've seen a few people say it was that way with ssri's. Also if you did go backwards after the drug came out of your system did you get back to baseline. Just wanting to see what different people's experience has been. Susan

Since iv's seem to help so many people are doctors willing to let you have iv's on a regular basis. What a difference in how you feel. Does anyone have any experience with this matter?

Susan

How have people done on this. I've been on the patch a week and a half. It's calmed down some tremory feelings but I feel like I am worse. Are the rebound tremors if you decide to pull off the patch. How long does it take to get out of your system.

Susan

Primary means that they can't find any other disease in you that could explain the POTS. If they find that you also have some other disease that could account for the POTS, then your case of POTS is considered secondary, not primary. Hyperadrenergic means that you get elevated norepinephrine levels when you stand up. If that theory about the faulty norepinephrine transporter in POTS patients is correct, it would account for high norepinephrine and normal epinephrine levels.

It's interesting that you get hypertension when you stand up. Have you had your blood volume tested?

Is rhis why in hyperadrenergenic pots they try norepinephrine reuptake drugs?