Jersey Girl

Keep up the appeals! Maybe we all need to band together to consider a class action suit! I have been denied twice. I wan't even correctly diagnosed for almost 2 years. Keep your chin up (when you can!) Martha

OH, MY GOODNESS! So sorry to hear of your nasty fall--falling because of loss of balance is scary. I often have felt like I am going to fall and catch myself at the last minute. I would have to tell the ER doc not to give me the numbing preparation with the epi in it if I were having sutures. I hope you get cleaned up real soon and get some rest. Take care, Martha

I also get tachy after each meal and have found that the only way to minimize this symptom is to eat very small portions more frequently throughout the day. I also eat very plain foods as spices will set me off as well. Martha

I had really bad vertigo on top of the tachycardia and blood pressure instability when I was first ill with POTS (but not diagnosed as such). I subsequently failed an ENG test and had vestibular rehabilitation therapy for 6 weeks. When I went back to the vestibular doctor for followup, he said I didn't have a vestibular problem but didn't know what it was. My dizziness is still worsened by my period and ovulation but I was told at NIH that it is because of the extra adrenaline that is released at these times of the month. That is why the Xanax helps me as well because it counteracts the effects of the extra adrenaline. I had pain in my left ear but the ear specialist I saw said I had a normal exam. Martha

CONGRATULATIONS! I have two boys (17 years apart) and love both of them dearly. Such exciting news--and a move on top of it. It's so refreshing to hear happy stories. Best wishes, Martha

My blood pressure is all over the place too--lately from 150/90 to 96/60. I feel bad when it is at either extreme. I would think that you might need some electrolytes as well to help you hold onto the fluids. These medical procedures can take alot out of us. Feel better. Martha

Morgan, Sorry you are going through a rough patch this winter. I wonder if the weather doesn't affect us all adversely. Wishing you were feeling better. Martha

Dear Avais, I also have a presciption for Xanax (0.25 mg scored tabs) and find that it helps me as well in those situations that naturally increase anxiety such as flying. I find that premenstrually I also have a need to take it. I don't take much of it and have found that even 1/4 of the tablet often helps. It is the only thing that has helped me in those situations as I react poorly to beta blockers. Martha

I will send Emily a card. I just underwent minor surgery on my shoulder and have been experiencing a great increase in my symptoms too, but not to that extent. I am wondering if the injection of steroid that I had few days prior to surgery to relieve the excruciation pain isn't affecting me adversely as well. I generally feel like crap no matter what I do. Martha

I had surgery this past wednesday and did well except that the anaesthesia and pain killers afterwards made me extremely nauseous (and I vomited after getting out and home). I don't have any more pain now than I did before surgery and see the doc for postop on Tuesday and then PT eval for my shoulder that same afternoon. But I am incredibly dizzy because I am getting my period after skipping it for a month! I am so sensitive! Everytime I get out of a chair my head is spinning. I wish there was surgery for POTS--I can't stand it. Martha

I saw another orthopedist this past Friday after being up all night in such excruciating pain in my right shoulder and arm. I took 4 or 5 percoset and it didn't touch the pain. I have been having problems for at least a year. I received injections of steroids last June and September and have had some massage therpay as well. The pain and loss of function escalated over the past 2 weeks so I had made an appointment for a second opinion. It turned into an acute visit and I got another injection and appointment for surgery on Wednesday. My arm is "glued" to my side and any movement just kills me even after the injection. I don't know if this is related to the POTS or not but I have no choice but to have the calcification removed and the impingement seen on MRI taken care of. I am a litle worried about the anaesthesia and hope to get the same one I had for the D & C. I want my arm back! Martha

I would ask to have the MRI's compared for academics sake, but it is such good news that you are responding to treatment. Wishing you the best. Martha

Timbo, Sorry to hear about you kidney problems. How long have you had dysautonomia before these issues started? I hope you get an explanation. Martha

Persephone, I had the same problems for the first 9 months I had POTS without a diagnosis. My pressure would shoot up to 200/110 and I was so scared. I went to the emergency room twice because i had no idea what was happening to me. I had multiple tests for adrenal gland ttumors that were all negative. My BP eventually started droppping and after 15 months it was 88/50--go figure. I was put on a calcium channel blocker after the first 2 months that helped stabilize it a little but became reactive to that medication as my BP started to drop. I'm not sure if we have the hyperadrenergic form of POTS or not. Maybe someone else on this forum is more of an expert than I am on this matter. You should definitely watch your salt intake during these spikes in pressure. I was extra sensitive then. Now I need more salt to increase my blood volume. I think I need my thermostat fixed! It seemed that the only help for me was the passage of time on this issue. I still have frequent shifts in BP and really feel it when it drops low. Take care, Martha

Glad to hear you're feeling a little better--take care. Martha

Julia, Just wanted to say "hi" and hope you get some answers soon. It took me a long time to be correctly diagnosed. Martha

I get dizzy from the overstimulation in any crowded place or any place that is noisy or has bright lights or even if the aisles are too close together in a store. I shop for short periods of time in a small grocery store that isn't usually crowded. I have taken Xanax on occasion and it settles my heart down a little but doesn't take the dizziness away. On occasion I have to run to the bathroom because I am so distressed. I wish I could offer you suggestions that work but this has been an ongoing problem for me. Martha

Hello Miriam, I'm sure you will find out some answers from the reports when they are ready. It is overwhelming to be so thoroughly evaluated even when feeling ok, so considering the brain fog that we POTS sufferers normally have , it's not surprising that you forgot to ask all your questions. I hope you eventaully get some reassurance about your condition. I haven't been to Mayo but have been told it is first-rate. Take care, Martha

I hope you're feeling a little better real soon. I have also been fighting back a cold. I bought Celestial Seasonings Complete Care Tea with echinacea and have been drinking that the last few days. It has a minty eucylyptys flavor and is quite pleasing. Is the epidural supposed to be long lasting? Martha

Julia, that's great news that you have been accepted into their study. Thank goodness for research to help us in the future. I hope you get some more answers. Martha

You mentioned that these episodes are sometimes precipitated by alcohol or little sleep. I was told by different autonomic specialists not to have ANY alcohol. Also if you need something to sleep you should ask your doctor for it, because rest is vitally important in dealing and healing with POTS. I hope you feel better soon. Martha

Hi Hayley, I can't explain why I used to have these same pains the first year I had POTS but I did. I also had the autonomic swelling of both calves, the left being substantially worse. Even today I have pains running down the side of my left leg into my foot that the orthopedist said was a form of sciatica--I always thought sciatica ran down the back of your hip into your leg but he said it is also possible to have it down the outside as well. Take care, Martha

Dear JB, I have felt this same way so many times over the last almost 3 years and it still feels like yesterday, waiting for this POTS to pass, if it ever will. I also needed a lot of dental work after about a year of having POTS. I think it may have to do with dryness of the mouth from the dysautonomia so I've been extra vigilant about brushing, flossing, rinsing and drinking alot more water. I'm so sorry you're feeling down today. I put off going to the dentist too and was never been able to tolerate the epinephrine that is included in some novocaine preparations even before the POTS. I probably should have gone sooner looking back to save myself some painful days of facial neuritis. Take care, Martha

I have just recently had to increase the amount of Neurontin I have been taking. I have the 100mg capsules so it is easy to do. I don't know if my increased need is due to weather or hormones or what, but I can't get out of bed without it because I feel so miserable. I need it every 4-5 hours. P.S. You're not the only one who couldn't tolerate the EMG test for nerve damage. I was crying after the first jolt--it made me think that this is what an electric chair must feel like--not a pleasant thought. The test had to be cancelled. There is a generic Neurontin and it isn't real expensive. I hope this doc will at least let you try it. Martha

Yes, I would definitely pursue this furthur. I would look for a good internist. I'm not sure all the symptoms you mention are POTS related, so I would have them checked them out. I know what you mean about having to start with a new doc, but maybe that's the only way you will be taken seriously. I hope you get some explanations. Martha