Jersey Girl

What a beautiful name! CONGRATULATIONS! to you and your family. Martha

I dislike emergency room doctors, not personally but in general. A friend of mine was turned away twice in the same day at the ER recently and admited via ambulance the third time and now has just been transferred to a rehap center because she can't walk after being a a coma for a week. Can you arrange for her regular doc to see her? It doesn't sound like much fluid at all that she's had. Martha

Dear Tearose, I was so sorry to hear of your denial. You should definitely appeal with your same attorney or get a new one. I don't know what that judge was thinking! You deserve better. Martha

Feel better and take it easy. You deserve a rest! Martha

I too had horrible chest pain and for that reason was admitted for a full cardiac workup before I was diagnosed with POTS a few years ago. I still get it occasionally and take tylenol, aspirin, or neurontin to help it. I also drink extra fluids at this time as well. Glad you're feeling better. martha

I hope you can find some answers. Be sure to write down all your questions ahead of time so you won't forget (like I always do)! Let's hope this new doc will take some time with you. Take care, Martha

Hi Rachel, I get nauseous when my blood pressure drops but not the way you described with vomiting. I would suppose that if your blood pressure drops suddenly, you might respond physiologically by vomiting. I also recently spoke with an attorney who specializes in social security disability insurance (SSDI) denials to handle my appeal. You might want to consider trying to schedule an appointment with an autonomic specialist now so you could make plans to travel. It takes a few months or even longer sometimes to get in. The weather would be better for traveling then. Martha

Hi and welcome. I haven't had any tests to prove I am hypovolemic but I have been told that most likely I am and so I should drink a minimum of 64 ou per day and have frequent salty snacks. This helps a little, but I am curious about the procrit/epogen that some on this forum take to increase their blood volume because I am exhausted most of the day. I live in a county that has the highest incidence of lyme disease in the state but manysophisticated tests for Lyme came back negative. Martha

I feel so bad that you had to have another EMG. I had one attempted on my left arm 2 years ago and they had to stop it because I was so overly sensitive to the pain and couldn't hold still and was crying. I would take an MRI anyday after that one attempt. Sorry that you didn't get a better report. I have been having terrible neck, shoulder and bottom of head pains that don't seem to respond to much of anything and I believe I have lost some muscle mass in my forearms as well. I was wondering if they were worse because of these recent storm systems. Which institution did your EMG? I hope you recoever soon. Martha

I too am so very happy that you joined the forum and so grateful that you can so well express in words online what I believe most of us feel. I want to thank you-- and keep the posts coming! Fondly, Martha

Dear Tearose, Thanks so much for sharing the particulars of your phone conversation with the Mayo doc. It helps us all to better understand what's happening to us. Dear Ginger, Thanks for sharing about the bladder issues. If I get that way I'll know what to do. At this point I just run alot to the bathroom frequently throughout the day. Take care, Martha

Dear Ernie, I feel so bad you spent so long waiting and came away with so little. I hope the neurologist calls you back soon so you can get some answers. Please take care of yourself. Martha

I had acute onset of similar headaches behind my left ear and at the base of my skull when my POTS first starated. I eventually saw a neurologist who specializes in headachers who said mine weren't migraines. I was put on high dose of neurontin (400 mg 4 times a day). I still get this same headache although less intense on a daily basis and take neurontin 100mg 2-3 times each day.. I am also light and noise sensitive. I also get sharp shooting pains randomly as well, if I am overdoing. I spent months in bed initially because my headaches and dizziness were unbearable. Hope you can find some relief. Martha

Hi Blackwolf, I have had light ( and noise) sensitivity and visual streaking and shooting pains in my head and stiff neck so severe I would just cry. I have had them since the start of my illness almost three years ago and they are ever so slowly fading although still very much present and can be frightening. If these are new symptoms I agree that you should have them checked out. I was also running to urinate all the time and still am somewhat. I was put on Neurontin for the headaches and stiff neck and am still taking it in small doses. I take 100 mg before I go to sleep and take it during the day as well to help me stay upright for longer periods of time. Hope you can get some relief. Martha

I also have slow thought processing at times and memeory problems ( I called someone over the weekend and left a message , when they returned my call I hadn't remembered calling), but have accepted it and generally have stopped worrying about it because there doesn't seem to be alot to do about it. It is definitiely worse at times. Oh well..hoping that this too shall pass. Martha

I wouldn't eat or drink that morning in case you do faint. My last tilt test was more definitive because of this. martha

Thanks for posting about your visit. It was interesting to hear you were taken off the Florinef and Mestinon. Hope you continue to improve. Martha

Where did you buy the polar heart rate monitor? It sounds like a good idea. I always react to very cold weather also. Martha

I have been having severe myalgias and neuralgias of my neck, shoulders, back and hips and couldn't lift my right arm so I went to see an orthopedist who diagnosed a calcification on my right rotator cuff after x-ray and MRI back in May. (Many of these symptoms subside in the morning after 10 hours sleep). Normally he would do arthoscopic surgery to remove it but because of POTS he was reluctant. He gave me an injection of steroid this past summer which not only helped my shoulder pain but generally made me feel a little better for about 6 weeks. I returned in September and had a second injection but it didn't do much except screw up my menstrual cycle and I ended up witha D & C. My left hip also became very painful in the Fall so the doc ordered an MRI of my lower spine which showed some old compression fracture from an automobile accident. He offered me nothing so I went to a massge therapist who was able to correct some pelvic tilt and some acute pain subsided after 6 sessions. I went back to him for followup yesterday with the massage therapists report and the handout from John Hopkins pediatric chronic fatigue center on the value of physical therapy and myofascial release to correct postural asymetries and to relieve neural tensions and see if he knew anyone locally who would do this type of therapy. He was reluctant to order physical therapy but eventually said he would in order that I should learn the techniques to relieve the pain, because I have a chronic problem and the insurance won't cover it. We also discussed whether or not I should see a chronic pain specialist for relief. He said if he had chronic pain he would go on methadone! I also have developed ganglionic cysts on both wrists because of the yoga I have been doing the last few months. But that's not what gets me angry and upset. He started in initially with, "How are you?" I told him I felt the same. "Why are you here"(He had told me to schedule the follow up visit)."Why was I feeling worse that I had to go on the Neurontin and my pain had increased?" ( I told him probably the change in the weather, forgetting that I was the same before the injections of steroids). "Well, maybe I should go to a warmer climate for January and February", like I can with a school age child and a husband who works locally. "Was it the hot or cold or barometric pressure that affected me?" I said all of the above. He tried to twist whatever I said, so I accused him of playing word games, and he got mad, and said I should reschedule my visit, and I got up to leave, but my husband is the pillar of calmness so the visit proceeded to the point above. I was quite upset and I wasn't asked to schedule a followup visit this time, like I would go back. Martha

I could barely sleep at all the last couple weeks of my 4 pregnancies because I couldn't get into a comfortable position so I was definitely tired. I didn't have POTS that I'm aware of during these pregnancies (although I wonder now if I didn't have it with the last because I was on bedrest for unexplained premature labor). You are on the home stretch and should definitley take it easy so you will be rested up for labor. Good luck! Martha

So sorry to hear that you have been having bad tachycardia. I reacted poorly to the beta blockers but I know everyone is different. I take 250 mg of GNC brand of Potassium and Magnesium aspartate in addition to my other vitamins and feel it helps me somewhat. I also was inspired to try the South Beach diet for a week when my daughter was home visiting and have recently begun Phase 2 of that diet. I think it has helped me feel a little more stable also. Take care, Martha

Dear Nina, I am also "lying low" today after my husbands office party last night. We visited the Statue of Liberty via party boat last night and boy am I dizzy today, even after sleeping in until 9a.m. I feel like I am on a rocking boat today still, even though we had a fairly quiet ride. I didn't even do that much at the party, just stayed up past my early bedtime. It's not fair that we have to pay so much the next day. Commiserating with you, Martha

Tearose, Thanks so much for sharing the results of your dr's visit. I'm glad it went well for you. One of my daughters has been home the last few days so I didn't have a chance to see all the new posts until today. I also have some degree of vaginal and uterine prolapse that I began to develop after being bedridden for 10 weeks at the end of my last pregnancy with a 10 pound baby who was delivered vaginally 10 years ago. My legs swelled up terribly after delivery and I attributed it to the extra IV fluids I had during the long labor. I wonder now if it is related, but I certainly didn't have all this dizziness and headaches that I have now. I even went back to work when he was a few years old. I believe I also have the hyperadrenergic type of POTS which might also explain my muscle weakness. I also find that I feel somewhat better after Yoga but that effect is transient. I also am usually constipated and running to the bathroom to urinate frequently. I didn't realize it may be related to the high norepinephrine levels. It seems there is so much we just don't know. Ginger, Hope your visit at Mayo goes well too. Take care, Martha

Dear Mary, I'm so sorry that you are feeling so bad. You should not get upset that you are feeling so crummy because I think it makes it worse for us. You will "walk through the valley" and come out a stronger person because of it, I'm sure. When I feel particularly horrible I just get into bed with my child and I let him watch TV even if I can't. He still feels close to me and accepts that I don't feel good. You might want to consider family counseling since it is affecting your marriage as well. Martha

Wow! that's a lot of stress! I would definitely need to take my Xanax all the time, which I usually reserve for those times when I can't control the adrenaline surges, like premenstraully or when I have to go out to a place where there's a lot of sensory stimulation. I know this type of medication is controversial for some, but it has been a lifesaver for me for exactly those situations which increase stress. Martha