Lemons2lemonade

When I saw Dr. G he talked to me about risk factors for pots, I was curious whether or not there are other ones. Perhaps abnormal ones that wouldn't typically come up or be normally correlated.

Questions about our past

seeing how everyone else is sleeping!

I have had a lot of holters and have never heard of that. I wonder if it is similar to a prolapse?

Florinef helps me with bp and heart rate stabilization. The forever question is kind of a daunting one. I don't know the answer. I hope I am not on it forever. However, I would rather die 5 years early from the steroid and a life full of activity, then 5 years later spending my whole life locked in my house or in bed. So I guess it is a quality of life issue for me.

I am not sure exactly how the ssri works as far as pathways. I know it plays huge role in helping to regulate serotnin, which is a vasoconstrictor.( http://www.ncbi.nlm.nih.gov/m/pubmed/9585103/ ) Dr. G's nurse could probably tell you more. Everyone is different, but my experience was that finding the right medications for my body created a much more stable autonomic system- with less variance in hr and blood pressure. Some medications worked for me and some did not. Going through those medications was a really tough time for me, but I am happy that I tried it because I am much more functional today because I did.

This really plays into my acid base balance theories between the kidneys and lungs. Also, wonder if increased amounts of fossil fuels being burned in the area makes it worse?

For me, the shakiness was caused (as far as I can tell) with the adrenaline. It also coinsided with urinating frequently. Every time my pots changes, I go and get a basic metabollic panel, cbc, and am cortisol done, just to make sure things are working right.

Having a high heart rate and high bp is not good for your body. It could be the meds causing it, especially the midodrine, but another possibility is that you could have hyperadrenergic pots. My pots attacks initially started with a pulse of 145 and bp 130/100 which is high for me. Then they started swinging around a lot like yours is. High,low, normal etc. Sometimes I wonder if the medications aren't working against one another. The worst of this was when I was on metoplerol. I know how you feel though and it is rotten. One.minnute you feel like your bp is going to drop off forever and the next it feels like your heart is going to leap out and run down the street. My high bp, high pulse episodes made me feel much more worse than just the low bp. I think there are two possibilities you could discuss with your doctor: 1. The medication isn't doing an effective job of managing your symptoms 2. Your pots is changing in and of itself. When I was first diagnosed I was put on metoplerol to great effect and it worked for 6 months in controlling the tachycardia. Then things got crazy and I went through a lot of meds including midodrine and ended up doing the florinef ssri route. Everyone reacts different to ssri's but maybe this is something you would like to talk to your doctor about. When I took the ssri with the metoplerol my pulse went down into the 50's consistently. I must admit it was a welcome change from the high heartrates but 50 is also too low. After that, we took out the beta blocker and kept the ssri while switching to florinef. When I saw Dr. Goodman in Arizona he recommended that I add propanolol to the mix. I haven't done it yet simply because my heart rate is under control and I am functional and am worried about the swings happening again. One other thing I noticed is that too much salt and not enough plain water(not gatorade) would make my symptoms worse. Once I switched from gatorade to water I started doing better.

I would definitely go see a doctor about this asap. To have a pulse that low is abnormal and means that your heart is not functioning properly. Is it possible your oximeter isn't working accurately? I ask because my pulse was in the thirties once and I wasn't going anywhere..I couldn't even move, let alone stand. The rate was confirmed by an ekg which showed abnormal heart rhythm. If money is the issue with the health insurance, you can go to your local dshs office and they can help you get medical coverage.

Wonder if this plays into our morning tachycardia?! http://en.m.wikipedia.org/wiki/Hypothalamic-pituitary-adrenal_axis#section_3

"This brain region has been implicated in planning complex cognitive behavior, personality expression, decision making and moderating social behavior. [1] The basic activity of this brain region is consideredto be orchestration of thoughts and actions in accordance with internal goals." " The prefrontal cortex is highly interconnected with much of the brain, including extensive connections with other cortical regions, as well as subcortical areas. The dorsal prefrontal cortex is especially interconnectedwithbrain regions involved with attention, cognition and action, [12] while the ventral prefrontal cortex interconnects with brain regions involved with emotion. [13] The prefrontal cortex also receives inputs from the brainstem arousal systems, and its function is particularly dependent on its neurochemical environment. " --the brainstem regulates autonomic function. Perhaps a defect, even chemical or in relation to poor blood flow, in this part of the brain relates to our cognitive issues

Dr. Goodman told me that florinef makes birth control ineffective, not only for managing pregnancy but also for helping with symptoms

Sif, its interesting thst the metoplerol also made your presyncope feelings worse

Good for you! Maybe going a little easier on the bike would lower the heartrate?

It goes to the sound of hokey pokey song and i sing it whenever I take my medication, it goes like this: You take the sodium in, You pee potassium out. You take the water in, And it sloshes all about. You do the potsy potsy and the room's spinning around, That's what its all about! I need a second verse, any ideas?

Mine are: Florinef: solved the tachycardia, increased weight gain, initial anxiety, increased fatigue, eventually reduced panic, stopped frequent urination, increased shortness of breath Metoplerol: helped with presyncopal feelings, did not reduce heart rate, increased ability to exercise, increased panic, increased palpitations, helped with shortness of breath Midodrine: did not help heart rate, increased chest pain, increases syncopal feelings, experienced periodic bradycardia, increased blood pressure Methyphenidate (ritalin): did little for focus, increased jittery feelings Citalopram(celexa): helped reduce heart rate, helped reduce panic, decreased clearness in vision , increased fatigue, helped stabilize emotions Lorazepam: helped with panic like symptoms, increased anxiety upon withdrawal, increased fatigue Tylenol: reduced chest pain, resolves headaches Promethazine: eliminates nausea Tums: reduces acid reflux/upset stomach Albuterol: increases heartrate does little for shortness of breath Probiotics: helped regulate digestive system Prozac: does nothing for pots Coq10: improves focus, increases pots symptoms upon withdrawal

The stress of pots makes me frustrated and since i have no outlet, it can manifest in the form of rage. Florinef is also a culprit for this.

I did for one week while things were crashing. It was the worst week of my life, don't know if it was the pots or the meds--midodrine was also in that mix. Anyhow, they basically admitted me to the hospital for detox and removed the beta blocker and midodrine. However, when I was on the beta blocker, florinef, and Citalopram my heart rate dropped significantly, especially after the citalopram. I learned something important though, and that is that more meds aren't always better. Unfortunately we all react different to medications, and I think a big part of managing pots is finding the right combo.

Yes, I start getting symptomatic right before take off when they pressurize the cabin. I plan on keeping a benzo with me when I fly in the future just in case. The summer before I was diagnosed I freaked out on a plane for 4 hrs. It makes me wonder if most normal people's anxiety during flight isn't also due to the cabin pressure.

Great article, thanks for sharing!

I plan on looking this up, but what have y'al heard about its effects on dopamine?

This is very interesting! " the Ang I was most likely entirely formed by renin and not by another Ang I–forming enzyme"

I also had insignificant spikes in my eeg. Wonder if there is something here.

I think the bottom line here is that your wbc count is low. It is abnormal, and can lead to a host of problems not to mention make you susceptible to many different infections. Leukemia is cancer of the marrow which makes white blood cells, which is why a low wbc count can be a marker. The lymph nodes are part of the lymphatic system of the body, which is responsible for immunity, and may be worth looking into. I think they need to biopsy your bone marrow to test for leukemia. I am not sure if leukemia would present itself necessarily as a tumor. As far as the eds, it could be that now your immune system is attacking your white blood cells instead of just your connective tissue. I really hope though that it is just a virus or infection that is using up all your wbcs which is possible and much more likely. Stress can cause a lot of problems in the body and managing stress is a major non-pharmacological treatment for many chronic illnesses. I always say that if I can control it then why worry about it, if i can't control it then why worry about it ~ Is the fever still around? When I took business law in college, it taught me a very important lesson-people can't be trusted even if it is your best friend or spouse when it comes to certain issues, in this case, money. I have been with the same partner for 5 years and during that time I have been tested for hiv 3 times. Not because I think he is unfaithful, but because I know that the stress of illness can create a lot of pressure on a relationship. It never hurts to be tested( other than the pin prick of course ). It can, however, hurt not to be tested. My parents were perhaps the most stable couple I know of and we had a very functional family life with lots of values. After 30 years of marriage, my dad had an affair and no one knew until he left my mom for the other woman. What I learned from this is that when the relationship becomes stressed, anything can happen, and sometimes you have to look out for number one. It is sad, but it is a truth in humanity that continues to repeat itself over and over.