Roy

Hi baby-boy. Most of the time when I lay down I get the skipped beat as well, always have since my dysautonomia started. I also have them more often if I lay down on my left side.

I called Shire today and they said that Pro-Amaitne is no longer on their program list as of June 1 becuase there is now a generic out. Looks like I missed the boat. As far as Canadian pharmacies go I have bought Amatine from canadadrugs.com in the past with excellent results. Good price, service and fast turn around. I have bought my inhalers from abconlinepharmacy, another canadian pharmacy, with excellent results as well!

Congratulations!!!!! I am so happy to see that people are finally getting the badly needed assistance that they so deserve.

Sorry to hear about your problem. Dealing with SSDI is a major headache! I received my initial denial in about 2 months. I am currently waiting on my appeal now and it has already been 3 months.

Gena, My chiro uses manual, gentle and not so gentle equipment on me. I do not not if it is the same type or not.Then I also do my stuff at home. I wear a 4 pound head weight for 20-30 minutes 2-3 times a day, I do something called spine molding. Where I lay on curved foam peaces, one under my neck and one under my lower back, 20 minutes twice a day. I also do some manual neck excersis 2-3 times daily and thats plenty. And thank you everyone for you postive responses.

I was curios if anyone else was having success with chiropractic care? I always thought that Chiropracti was kinda of quakish myself. But I started going to one about 2 1/2 months ago after I passed out and injuring my tail bone,lower back and neck after landing on a hard tile floor. My roommate talked to a chiroprator at his church about all of my problems and he hooked me up with a free evaluation. After he did the x-rays I found out that my C1 was putting alot of pressure on my spine due to my alar ligament being damaged some time ago. He said it was one of the top three worst that he had ever seen in 11 year of being in the business. I also found out that my that my spine doesn't curve in my neck or lower back. It is straight where it should be curved. I have had 30 in office treatments and I have been doing my home excersis that he set me up with for the last 2 1/2 months and I have noticed some incredible improvements in some of my symptoms. The numbness in my legs and arms has improved by 80%, my visual and auditory disturbances have been improved by 90%. My sleeping patterns have also improved alot. I can go to sleep 3-4 nights aweek now between 10-11pm. In the past I would be up until 2-4am unless I took something. I still wake up feeling like I was run down by a dump truck, but my mind is a little clearer and I wake up by 6-7 like I use, instead of the usual 8-10. Another thing I have noticed about sleep is that I have finally been able to take restful naps in the afternoon again for the first time since I developed POTS. I have had 3 since I started treatments. I always lay down in the afternoon for 3-4 hours from being just totally exhausted, but I could never fall asleep. My instances of nausea are down by 90% and I have had only 2 bad days of IBS in the last 6 weeks. In the past I would get awful attacks every few days, sometimes 3 days in a row. My sinuses are alot clearer. During the day my nose is generally so congested that I can only breath through one side of my nose or the other periodically or not at all. My levels of energy have improved slightly and I am a little bit more alert than I use to be. I can actually follow a conversation without drifting off into lala land and I seem to be able to reatin more now when talking with people or reading something. I haven't noticed much change in my excersie intolerance, blood pressure or palpitations, but they my improve over time. I talked with my chiro. about the brain fog. He said that he hasn't had to many patients with this problem, but that all of them that stuck it out improved from 50% to almost totally clarity over the duration of their treaments. So I am hoping for the best. My spine right now is so out of wack that he is giving it 2 years before it will be back to its original shape. I don't think that all of my symptoms are spine related though and I have no illusions of this being a cure all. My symptoms and quick deterioration came about after a viral infection. Before that I was very active and healthy. I promise that I am not trying to sell chiropractic care with this post.

For several months my heart use to be around 110-120 bpm when I wokeup. It would always slow back down once I became fully alert and started moving around. Drinking alot of water first thing also helps bring my heart rate back down. Now, my heart is some type of different cycle where it will be tachy for several mornings in a row, then goes away for a few weeks before returning to haunt me again for another few days.

POTS and alcohol don't mix. I was still having an occasional drink during the first stages of POTs before I had a clue as to what was going on. After a drink or two my heart would start pounding, I would get dozens of PAC's and the fatigue the next day was awful. I stopped having drinks months before my doctors warned me to stop. I wouldn't dare have even a sip nowdays.

I can understand what you are going through. Healthy people have no clue how we feel and what we go through on a daily bases. People see you doing activities and assume your feeling well or not sick at all. Most doctors don't understand this so I don't even try to bother to explain it to anyone else anymore. About a month after moving in with my roommate he told me he thought I was faking the whole thing becuase I could I could get out and do things. But after a month of living with me and seeing all the trouble I go through he finally realized how bad off I am. He and my other roommates still forget how sick I am though. They always try talking me into going to out to dinner, the movies or worst of all clubbing. lol! That last one just proves how little they understand. In the last two months I have missed my brothers highschool graduation and a cousins wedding. I also have problems driving. I get worn out from going to my daily chiropractic visits. It is about a half hour each way and I am totally exhausted by the time I get home. If I am a passenger I have to stop about ever 2 hours to rest or I'm a total zombie by the time I reach my destination. As I figured out over the years you just have to learn how to say NO as the slogan goes and be firm about it. If I give into peoples baggering about doing things they will keep doing so in the future.

Well, this disease has not only ruined me physically it has now destroyed me financially. I went through the last part of the bankruptcy process today. I am now free from 195k in medical debt, but now I am worried about future bills. I just had a 3k ambulance ride/ER visit during my filling process. I was lucky to get that one in before my filing deadline. I will now be stuck with any future ER and doctor bills. I can no longer charge my meds. I don't know what I am going to do about that. My EP, the only doctor who vaguely understands my case, will no longer see me becuase I wiped out his bills, but they were large bills though. Anyone else stuck in this rut?

I get more PVC's when I am tired, dehydrated, or if I have been pushing myself to hard physically. I might feel reasonable well all day, but have PVC's all day long. The other day my chiropractor did some work on my neck and over the next 6 hours I must of had hundreds of them.

For me florinef falls in the poison category. It makes me feel worse. It gave me bad headaches and made my POTS symptoms worse overall. I was on .1mg twice a day for about 2 week then I cut the dose in half for about another 2 weeks. Even at the lower dose it still did more bad than good. Hopefully you will be one of the lucky ones.

I just recently started having this too. The last time I went to the doctors office the nurse tried several times to get a sound the second nurse had trouble as well. A couple of weeks ago at another one of my ER visits they had the same problem. Both times my BP was really low.

My joints have always popped really loudly ever since I was a kid. I don't know if it has any relation to all the asthma meds and prednisone I was on or some genetic thing that is also some how related to the POTS. The joints that pop the loudest are my knees hips and elbows.

Thanks for everybody's replies! I will be buying some sooner or later. I just have to save up my nickels and dimes.

My favorite place for protein is the Protein Factory. Their prices are some of the best that I have been able to find and they fill your order to your own specifications. You can add flavorings, sweetners or even vitamins or you can order it plain. http://proteinfactory.com/store/default.ph...php?cPath=22_28 I use to choke alot when my POTS first started. I use to get it every day while eating, drinking or it would just happen out of the blue. My throat would just start spasm. I don't get too often anymore, but it sure is scary when it happens.

http://www.bodytrends.com/products/resistance/ I was curious if anyone out there was/is using these and what they think. I saw some one in the park using them the other day and I thought they may be good to try out. I wanted to start going to the gym, but I don't think my body is ready for that just yet.

I never had blood pooling in my hands until about 2 months ago. I was standing up and talking to someone and looked down and my hands and nails were purple! Scared me at first then I realized that it must just be ANOTHER symptom. I have noticed it about a dozen times since then. My feet only swell up and turn reddish purple when I take a hot shower.

Shortness of breath was one of my first symptoms too! I get it every day to some degree. Some days I can hardly breath when I stand up or I can quickly become out of breath from just sitting or talking. Other days I won't even notice it unless I walk up stairs or some type of inclined walk way. Then I become very tachy and out of breath.

Roy, What's the "real jam" you get yourself into if you don't lay down 2 - 3 X / day? If I don't let myself recouperate and I try to push myself thru an entire day without resting, I become very symptomatic and it takes almost 2 full days of being bed ridden to get back to "normal". I can definitely relate on the sometimes overwhelming sensation to recline.

Sitting isn't the best for me either. Somedays my symptoms are only slightly better when sitting. When I do sit I have to sit leaning forward on the desk or with one leg propped up to my chest for support. I can no longer sit with perfect posture. I'm affraid I might end up a hunchback. I must lay down 2-3 aday as well if I don't I can get myself into a real jam.

I was wondering if anyone out there has had seizures. Yesterday I had my first and hopefully last one. After a long day at funeral services for a relative of mine I came home to rest. I stood up to go and get something out of my car when I collapased in the doorway. I fell straight on my butt then on my shoulder rolled onto my back and went into a full seizure. I don't remember anything besides being loaded into the ambulance. They did a CAT scan, blood tests ect. Everything came back normal and after 5 hours in the ER I felt fine and they sent me home with the advice to see a neurologist. Today I have felt fine other than dealing with a bruised tailbone and shoulder.

I get similar breathing symptoms. I have had breathing problems since my pots first started. When I stand up it feels like I can't take a full deep breath. It feels like the lower part of my lungs are being squeezed and it goes right away as soon as I sit. This symptom was one of my very first with mild tach. when standing. I thought that it was my asthma acting up in the beggining. I was placed on steroids, had my asthma meds changed several times, went to two pulmonologists, had 2 PFT's done(both showed excellent lung function), I even went to the ER twice because it was so bad. I was asked if I had OCD or any history of mental problems and even told that I was just having panic attacks. I have asked several doctors since my dx why this happens and I was never given an answer. I was eventually told by a neurologist/dysautonimia specialist at UCLA that she believes that blood pooling around the diaphragm causing it to spasm and tighten up. This seems like the most logical explanation that I have been able to uncover. I also get generalized shortness of breath somedays. Where I feel like I'm just out of breath even just sitting up. I check my O2 saturation and lung function every day and it is normal. Which gives me some peace of mind, but it is still scary when it gets really bad.

metoo, keep us posted on how the asprin works out. I'll try anything to try to stay cooler. Summer IS a real drag. I am not looking forward to the long summers we have here. I already had a bad brush with the heat last week and spent 2 days in bed recovering.

I had to move not too long ago. I had an apt. on the second floor and loved the views, but living on the second floor was getting be too much. All those trips up and down with arms full of groceries or laundry just got to be too much for me. I am now in a one story house with the laundry room straight across from my room. If you have to move just remember to pack those boxes lightly. Mine where so heavy it took me 3 hours to move 7 boxes and some electronics. I had to take several breaks inbetween loads to catch my breath and let my heart drop back down from mid 180's.