RockiesGirl

For me it is especially bad on the Left foot. Really, I don't understand it either but the Left foot is the worst.

I had quite a bit of hair loss as well and have posted about it several times. There is a vitamin that really worked for me on NaturalWellBeing.com. I do not take as much as they advise but it still helped. Just a thought but I would still try to work with the Docs to figure the other avenues out as well. ;o) Take care

Thanks 4 posting!! I have been noticing that more & more of us are coming up with low Iron/ferritin. Several posts in the last few months and it seems that the doctors don't really 'check' it. I just started going to a Psychiatrist/Naturopath who is treating me as basically a Primary Care Doc. I had all my records transferred..... anyway, she noticed right away that my Iron/Ferritin was low. Now why the heck haven't the other Docs mentioned it in the 78 prior doctor visits? Sometimes I am so tired it is ridiculous!! But I am doing much better since starting supplements. I think you (we) are on to something here ;o) I hope you are now feeling better!! Keep us posted!!

Thank you so much for your post! Very informative and helpful ;o) Sorry you had to go through this and Hope you feel better soon!

Thanks ALL!! Corina: I can imagine that it will be an ongoing process of updating and adding....so feel free to PM me or add to this post. Have a good weekend!

Melatonin has worked wonders for me. The Doc prescribed TraZadone but it did nothing for me. Sorry haven't tried Ambien or Lunesta. Ashwaganda was a suggestion of someone on the blog and I had some success with that as well ;o) Both Melatonin and Ashwaganda are natural (you get them at the Vitamin Store) but make sure to get the time released Melatonin..... Maybe this will help?

I am currently working on updating the Physician List for DINET and am getting closer to being finished. Holy Cow.... batman!! I only lost all of my work once ;o) Anyway, do you all have any Physicians you would like to add who are not currently on the list? The list can be viewed on the main page. PM me or simply leave a response here of the Doc's name & #. I will follow up from there. Thanks all!! Hope your health is well & take care!!

I take Bystolic as well and it has been the 'miracle' drug for me too! It does not control the tremors, however but now that I am taking Melatonin for sleeping the tremors have dissapated a lot. If the Tremors get really bad and my heart rate is going bizerk the Doc said I could take 1/4 of a pill of Propranolol which works well too. The Doc tried to switch me off the Bystolic to strictly Propranolol but my HR was 120 to 140 again just getting up & going to the restroom. So I agree with you, Bystolic is the drug of choice for me. It took a couple of weeks to really get to working though and I had that flip-flop feeling in my chest quite a bit right when I started it.

I voted Suburban/Small town but I am pretty close to Denver about 25 minutes or so.

I am the exact way!! My symptoms seem to be exacerbated after a night of no sleep and the no sleep nights seem to be out-weighing the sleep nights by quite a few The doctor prescribed Trazoodone which doesn't seem to be doing squat. I fall asleep but usually wake up about 2.5-3 hours later and then can't go back to sleep until it is time to get up. It so *****!!

My thoughts and prayers are with you during your loss. Take care of yourself and try to feel better; I know it is easier said than done.... TAke care and post if you need to ;o) (((((HUGS)))))

Also sending LOVE and big gigantic HUGS to you!! Please try to keep us posted during your hospital stay!! Good Luck and God Speed

Yep I am in Colorado, are you?

Dizzysillyak-- I really appreciate your wonderful kind words and I hope I am conveying that to you ;o) He was completely worth it at one time, but if he can't handle the way I am I can't do anything about it as much as I would want to ;o) Best to just move on. We all have to DEAL on regular basis as I am sure you do too and we need a support system around us, I think. If nothing more than this wonderful site and all of the beautiful people who actually get it like yourself! Thanks Mucho!!

Hello Tinks Again; More recently I have been diagnosed with Adrenergenic & Cholinergic Neuropathy as opposed to POTS completely. Which in all honesty, I do not entirely understand. They say it is Stage 1 to 2?? Before I was put on the Beta Blockers and even after if I go off them....I can't stand for more than a few minutes or I will pass out. Recently though I have major tremors & the doctor again wants to switch my Meds. I try them tonight and will report. Toprol (& there is a generic) made my legs & hands turn blue, plus I was so unbelievably cold it was ridiculous. Bystolic has worked out much better, but now I have the tremors, mostly in my hands & neck but the hand-arm is very noticeable. Hence, the change in the Meds. Alot of others on here have been helped with Beta-Blockers but equally as many on SSRI's or SNRI's or something else. Do not know what is "right" for you but maybe you could discuss with your Doc?? I am working with a Cardiologist for all my issues but I have read that there are many other Docs who can help....I just lucked out with the cardiologist. All that said, the man is sooooooooo busy, I barely ever get to see him and he is not an expert on POTS or whatever the heck else it is I HAVE ;o) Hope all is well and you will continue to find answers!! Take care & hugs!!

When my heart, breathing, nausea etc gets bad I belch too! Weird.... sometimes I awake in the night & all I have to do is belch and I do, things feel a little better and then I wait for hours to get back to sleep ;o( Take care Lieze!!

Oh my goodness BellaMia I am reading your post...tears running down my face. I grant you that I have not been in a good place this week either, but where in this world are you? Can I help you in any way? From one Potsie to another I feel your pain!!! I have been here on the site since Feb of this year I think. & I still have so much to learn!! Funny how life does that! Please post some more and let me know that you are ok. HUGS and love to you!!! & from your writings it appears that you know God is with you!!

Are you on a beta blocker or any other meds? My BP seemed to swing both low and high before the Meds as well. And salt seemed to not really help all that much then too....now that I think back on it. I think for some people, mornings are really bad because they are trying to adjust from being Supine for hours at a time. Sounds like your body is the same. My symptoms seem to progress as the day wears on....Not sure why. Take care!!

I just want to say a BIG HUGE Thank You to everyone!! I am dealing with it!! My heart hurts, my pride hurts and my body is suffering, but this too shall pass ;o) Dizzysillyak-- I waited until Wedsnesday evening to contact him but he was not up for discussing. I know his family probably put a lot of pressure on him and I know that it can be extremely difficult to deal with. And I totally understand that he wanted me to rest that day, but life gets in the way. I went to lunch the day before with my daughter and then I had to work. I work from home and I tried to take a nap before the party but I was soooo keyed up, it wasn't happening.... All excuses I know & I keep running through it in my head. Obviously I LOVE him, but I don't think I could've helped what happened. Maybe if I wouldn't have gone to lunch, worked etc. but I talked to the doctor & he says chances are it probably would've happened anyhow because of all the excitement from the party. Also, I do not think it is fair to ask me not to do anything in preparation for the party, but maybe I am wrong. The argument was made that had I not done the other things, I possibly wouldn't have ended up in the ER. I know this, it is my responsiblity, but it was my 40th Bday!! It is not like I do this all the time and I wanted Special....not to sit at home like I always do I asked that we go to counseling, I asked that we work on it (I relly kind-of embarrassingly begged) but he says he's done. How do I cope with that? I don't think I can I haven't called him and I don't think I will for a while ;o) BUT Again everyone Thanks for your replies, kind words and listening!! I appreciate it more than you know.

Last Thursday was my 40th Birthday & my boyfriend of 4 years threw me a birthday event on Friday. 28 of my friends, spouses and his family attended. I was SO excited I can't even explain it, but of course the Tremors & dizziness resulted because of it. I got through the Birthday party fine, but we went to dinner afterwards with his family... While sitting up I pretty much passed out at the table in the busy restaurant I came to & I was laying on boyfriends chest. I was soooo embarrassed as this has never happened in front of his family before. I tried to get it together...it was the longest walk out of the restaurant I have ever had and he carried me to the car. Then the Nausea, full body tremors and racing heart started. I couldn't get it under control and ended up at the Emergency Room. Of course the Doctors had no IDEA about POTS Syndrome although they pretended like they did. They kept asking why I take Beta Blockers and why I was shaking so uncontrollably. They shot me up with so much Ativan I no longer was aware of anything for hours. My boyfriend stayed the whole time until they discharged us at 2am. I slept the whole weekend...missing out on all kinds of fun! I talked to him on and off but I could tell something was wrong. He broke up with me Monday morning over the phone He said he is tired of picking up the pieces and that I should be able to 'get my life in order'. He was angry that on my Birthday day I went out to lunch with my daughter and therefore didn't have the energy I needed for the party night. He was adamant and says he does not see a future for us anymore. I am just so hurt, angry and sad!!! My friends say that I am better off w/o him and say I am lucky I found out now instead of later... The thing is, just the week before he was asking me to move in with him, we were looking at houses together and he was talking about marriage! This just blind-sided me. I am trying to be strong and I have my faith, but I needed to vent to you all who might understand ;o) I didn't ask for this stupid SYNDROME and if I could do anything to get my old life back I would, as I think all of us would. Thanks for listening....

I had these something awful in the last year, but it seems with the Beta-Blockers things have improved overall.

Sorry Tinks...didn't have 'watch this thread' turned on Salt sometimes helps, sometimes not. When I feel bad though I crave it. It just seems to help with my BP a little bit. This weekend has been yuck!! I celebrated my 40th Bday on Friday.... I was so darn excited, nervous and shaking. Went to dinner after the party and passed out. Spent the next few hours in the ER with full body Tremors until they shot me up with more muscle relaxers than I have ever had. Of course told them about the POTS & they just looked at me with blank stares. Was released from the hospital early in the morning and spent the next 72 hours in bed. Finally feeling better on Monday & wanted to see my boyfriend etc. We have been dating 4 years and he broke up with me. He has been really supportive up until now, but he says I need to get myself in order (quote) because he is getting the short end of the stick. Really?? On top of everything else... I am just really having a hard time!! Thanks for letting me vent and cry in my wheaties!!

Glad it helped you !!! And it looks fashionable to boot ;o)Not really bulky... Take care!

Next time she thinks about flying to Colorado Springs & the Doc clears her of course, fly into Denver. They have tons more direct flights and it is only about an hours+ drive to the Air Force base. I would rather have a direct flight with a little more drive time than have to have lay-overs.... but that is just me. I am trying my 1st flight to Phoenix soon...a short one, but trying to see if heart can handle it Take care & I am happy to see that at least Kayleigh is living a little bit more of life than in weeks past ;o)

I was 1st put on Toprol but my hands were turning blue and serious other side affects. My Doc switched me to Bystolic @ 5 mg/ per day. It seems to work a lot better for me ;o) Less side affects, hope this helps!!