Jersey Girl

Were you fasting when you had your blood work done? You definitely need a new pcp if he treats you that way. Martha

I don't think the doctor treated you very compassionately at all! He'd be fired in my book. I saw an orthopedist a few months ago becasue I was having hip pain. I was sent for an MRI of my lumbar area (lower back) becasue the pain is referred from there. I had an old spinal injruy 30 years ago which hasn't given me any trouble in 29 years, but sure enough he said the old injury "affected the dynamic flow" of my spinal column which was causing the pain. I had already tried huge doses of aspirin in the previous months for a calcification on my shoulder which he diagnosed also which probably had been there for some time as well. Anyway, I went for weekly massages of my hip and found much improvoement not only in the pain but the numbness I was having as well. These are not relaxing massages--apparently the nerves can become entrapped in tight muscles and cause all sorts of discomfort. I am still on the Neurontin for my head, neck, shoulder and back pain and it helps my hip as well. I wouldn't go see that dr. again--possibly a D.O. would be more helpful. Take care. Martha

I'm with Michelle. When I was first became ill and couldn't get out of bed and couldn't sleep very well at all, I would say I was definitely sick without too much hope because no one knew what what wrong with me and that was scary. I have come to live with a "chronic condition" that I know varies from week to week, day to day, hour to hour, minute to minute. I have found it physically disabling in that I can't do near what I used to, but I am not totally disabled. I am very hopeful that someday, someone will find out how to improve our lot. Best wishes, Martha

Thanks for the tips. I'll try them. Martha

Blackwolf, I just had the same experience 2 days ago. (I was wondering if it was weather related as low pressure systems-miserable rain- were approaching and present) My lower skull, neck,shoulder and back muscles were in an excruciating painful spasm and tachycardia started up for no reason. and I went back on my Neurontin 200 mg 3 times a day, not a huge dose but it does seem to help. I also had a massage on Monday and it did nothing! I have also tried the aspirin, tylenol thing and it barely touches the pain. I have not had my sed rate checked recently but if yours is elevated it may indicate need for furthur workup. I get a little tired on the Neurontin but I am sick and tired of all this discomfort. Lying down seems to help as always but it is not always practical. Sending warm and comforting wishes your way. Martha

Hi Jody, I was also told after my initial evaluation at NIH this past January that I would be returning for the week long study in 6-12 months. I also called to see what had happend and was told that I was still in the study but that the study only would accomodate 2 patients per month due the availability of the pet scanner. I am also anxious to go because I feel I am in a holding pattern as well. Take care, Martha

Happy Hannukah to everyone. What is your latke recipe? Mine is always too watery? My youngest son ( 9 yo-the only one at home) wants a surprise gift tonight. He has picked out some of his gifts this past month so he knows a little what is coming. It has just been easier to do this as I have great trouble shopping by myself. I must go buy my chicken soon for tonight. Martha

I take 75 mg of CoQ 10 on a daily basis and think it helps with my energy level. I started with 50 mg daily for a few months before increasing the dose. My mother and sister also take it and they don't have POTS. Martha

I have had two D & C's since developing POTS. My periods are extremely heavy with painful, nasty giant size clots. My gyn told me it is expected that one's periods get heavier, not lighter before menopause and because of my age (52) I would guess that he is correct. I tried Alesse and Prometrium which only made me worse (hospitalized) and did 3 months of Lupon which stopped my periods for 6 months, but they came back worse than ever, so I'm not sure it was worth it. I don't know if the POTS made my periods worse or the periods make the POTs worse. There is defininitely a hormonal connection with POTS as 80% of us are women. Take care. Martha

I have terrible migrating neck, shoulder, and upper back pain, discomfort and spasms from taught muscles that sometimes affects my upper arms as well. It usually starts up in the morning after I've been standing for 1/2 hour and then I get dizzy trying to get my son breakfast and out the door to school. And I don't have any disk herniations. You mentioned that the adrenaline surge forced you to the bathroom. I have noticed that when I need to move my bowels, whether I'm initially aware of it or not, that I have a great increase in symptoms. And other times I know that being under stress will cause me to run to the bathroom, like in a busy grocery store. Your episode definitely sounds scary and needs checking out. Hope you don't have any more like it. Martha

Sorry to hear about your disc issues. I guess you won't be roller skating today , but feel better soon!

Sorry you are feeling worse lately. I know that I have to rest in bed for a few days if I have a cold, whereas pre-pots I could keep going. This is what television is for! Feel better soon. Martha

Dear Beverly, I am glad to hear that Nicole is living with you now, even though she has been going through some very rough times. Are you very far from New York City or Boston? If you look at this web site, there are autonomic specialists listed in both these cities. You might be able to rent a van and have her lie down to make the trip. We traded for a Eurovan (VW) 1 1/2 years ago because I didn't think I would ever go anywhere again, and it is comforting to know that I can just lie down when I need to. I hope that these tough times pass real soon. Martha

Wow! Timbo, I'm impressed. I would love to feel good enough to go back to work. How did you find such a stress free job? BTW, do you mind me asking what kind of work you were able to find? Do they know you have POTS? I have also been practicing my own relaxation techniques by visualization of relaxing times past. Martha

Yes, I have POTS that is ever so slowly improving over the last 2 1/2 years. Yes, I frequently use the bathroom for large amounts of urine, this symptom also improving. Yes, I always take pediatric doses of medications if I take any medication at all. I am extremely reactive to most medications. I can't tolerate perfumes. Martha

I would drink extra fluids and lie down flat in bed with my eyes closed for about 1/2 hour.until it would pass. It is very scary. I finally got a 24 hour holter monitor about a year ago because of the palpitations and even though it showed a lot of PVC's, they were not life-threatening. It was a little reassuring. Hope that these symptoms don't occur too often. For me it was generally before my period. Feel better soon. Martha

Food allergies don't always show up on RAST tests. Is there any correlation with something you may be eating or possibly perfumed detergent you wash your sheets or clothes in?

Happy Thanksgiving! I never know whether finding something on an MRI is good news or bad, but I wish you well and hope your hearing isn't affected too much. Perhaps some extra rest over the long weekend will help as well. Take care. Martha

If your bronchitis is viral, the antibiotic will just keep you from getting a secondary infection, but doesn't affect the virus. You should be cautious how much activity you do so you don't develop an pneumonia. Not usually an issue for those of us with dysautonomia. Extra fluids and rest are in order. Dr. Weil's website sometimes recommends zinc lozenges and other herbal remedies to fight viruses. I will only try very small doses of any new herb or medication because I am so overreactive to many things. Hope you're feeling better soon. Martha

I just came back from the neuromuscular massage therapist and she did some myofascial release which is amazing. I feel so much better after going. She said that the nerves can become entrapped in tight muscles. She did extensivse work on my suboccipital muscles which make my neck easier to move. I wish I could afford to go every day! Martha

It could be the vessels in your leg expand too much like mine do I have that same phenomena and was told it was autonomic swelling. I wear heavy support socks up to the knee and it helps a little. When you walk the muscles of your leg contract and send the fluid where it should be. I often need to get up and walk around after sitting at the computer even for a few minutes because I notice my left calf is almost twice the size of the right and sometimes it is numb and painful. Some persons find that compression panty hose to the waist helps them but it didn't do any more for me than the compression socks. I also found that if the leg is going to "swell" it does so even with the socks and I have to remove them because the compression is too painful. Take care. Martha

Earth Mother, What a beautiful recording! I love the "living in my mind, prisoner of time" I wish you could post the words to the entire song. For those of you who haven't listened yet, it takes a moment to download but is well worth it. This could be DINET's official song. Some people are so talented. Thank you for sharing. Martha

If it is recommended that you will need a tilt table test, I would request that it be done by someone who has knowledge of autonomic nervous system disorders(autonomic testing laboratory at some major medical centers). My first one was misinterpreted and I was misdiagnosed with vasovagal syndrome by an electrophysioloigst in a local hospital (despite having a heart rate that increased over 30 beats per minute in an upright position). My halter monitor was read as normal despite having an unusually high number of PVC's. This same cardiology group also tried me on different beta blockers despite them being contraindicated for many with POTS. Needless to say I don't go to these docs anymore. My blood pressure was also extremely high initially 200/110 but now it fluctuates from 89/50 to 148/92, so yes it is hard to treat. It wasn't until I had other tilt table tests by autonomic specialists that I was diagnosed with POTS. So in my experience not all tilt table tests are equal. By the way hello and welcome. Let us know how you progress. Extra fluids (64 ounces per day) has helped me, but doesn't relieve all my symptoms. I am also light and noise and temperature sensitive and can't seem to find much help for that although it has faded a little over time. I'm sure your doctors will want to run many tests to rule out other conditions. Take care. Martha

Hi again. I have always had heavy periods that lasted 5-7 days. Both my daughters (23 & 24 yo) do as well and they were put on the pill so they wouldn't miss school. I also have 4 first cousins (all sisters) of my mother's sister that faint on the second day of their cycle since they were tenagers. I have suggested they have a tilt table test but I don't know if they have. I didn't have POTS symptoms (that I was aware of) until 2 1/2 years ago however I always felt great when I was pregnant (I have 4 kids). I may have spelled the name of the other bcp wrong --it may be Yasmin. I was told at NIH that there is an increase in adrenaline premenstrually and at ovulation normally for most women and we are extra sensitive to its effects. I hope Nicole will feel better soon. Martha

I felt somewhat validated after reading the handout on treatment of orthostatic intolerance given to patients and their families by Johns Hopkins University Children's Center Chronic Fatigue Clinic (Febraury, 2003)--there was a post for this link under muscle weakness thread yesterday. I printed it out and on page 6 it notes "a high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in manh of our patients with orthostatic intolerance." It notes that "several weeks of gentle manual pnysical therapy often prepares them to tolerate the mild aerobic exercise that would have acaused a flare-up before hand." and "the diagnostic expertise of a physcial therapist may be essential to identifying problems. Manual techniques that our colleagues employ include gentle neural mobilization (or neural tensioion work), myofascial release, and cranio-sacral therapy." I have had a stiff neck,upper back, and shoulders since this all started and have yet to be offered physical therapy. I have spent my own money going to a highly trained neuromuscular massage therapist just to be able to turn my head and not be in constant spasm all the time. I was also self-referred for cranio-sacral therapy that the insurance only partially covered. Recently I have had a massage therapist work on my left leg and hip to restore some function. She uses myofascial release and neuromuscular massage as part of her treatment. She also measured my hip flexion and found that my left hip rotates 5 degress anteriorly more than the right. I definitely feel better after seeing her. Now I know why that I'm not alone in experiencing some relief from this hands on approach. Physical therapy and exercise treatment are listed under their Step 1 treatment plan for everyone. I get angry that after all the doctors I have seen and told them about these issues that I wasn't told that this would be helpful. I had to figure it out with trial and error on my own. It's not like I haven't been seen by an autonomic specialist. Why do kids get the benefit of the doubt when it comes to illness? Granted pediatricians are much more caring individuals. Why don't adults get handouts as good as this one? The handout also notes that "therapy has to be tailored to the individual and usually requires persistence and a willingness to try multiple methods." I can't even get a phone call back from the doctor. So I am curious to know if anyone has ever been prescribed physical therapy for their "adverse mechanical tensions?" Martha