lgtaylor100

Lissy - Your reply was very encouraging. I have retreated from many situations since I became ill. I know that it is not good for me but I fear that uncomfortable feeling that you talked about. I find that when I do get out and participate in life I generally feel better as long as I do not overdo. I fear needing to lie down when there is no place to lie down. Your method of densensitizing yourself is exactly what I would have recommended as a counselor, yet I find it difficult to do myself. Again, thanks. Lynne

Sue- How have you been able to accept what you can and can't do? It seems the only time that I am not depressed is when I have a few good hours and feel like there is some improvement. My symptoms started about a year ago and I was diagnosed in February. It is so hard to get used to not being able to do the things I did before. If anyone else has some advice and guidance it would be greatly welcomed. I am really struggling with this. Lynne

I was diagnosed with POTS and had the thirty point elevation in heart rate which went up another twenty points during the test. My blood pressure remained stable for the most part but went up slightly (10 points for systolic and 10 for diastolic). I don't really fit any of the patterns.

Yes I had those symptoms too, although I am not taking Florinef. I thought that it might be just another symptom of autonomic dysfunction but it turned out to be a UTI.

I always feel dehydrated too but when I was recently in the hospital they said I wasn't dehydrated and didn't give me a saline IV. They said my electrolytes were fine. Does anyone know about this? If your electrolytes test normal does that mean you are not dehydrated and if so why do I feel as if I am/

Also, forgot to mention that symptoms appeared after many stressful events in my life involving my grown daughters. Of course the job as a clinical counselor was stressful too. You hear a lot of sad stories but I don't think I took it home with me.

I worked as a pension consultant for most of my career. Then in 2003 I went to graduate school and obtained my license as a counselor. I worked as a licensed clinical counselor from May of 2006 when I graduated until September 2010 when I was hit by this dreadful disorder and am now unable to work. Most days I can't get up off the sofa. This has been catastrophic for me because so much time, energy and money went into preparing for my new career which I loved.

I had insomnia for four years prior to the dysautonomia. I used sleep medication(Lunesta)which worked for two years and when it didn't work anymore I was switched to Ambien and that worked for two years. Then after that it didn't work as well and I started waking up every hour or two. Then came the tachycardia, no appetite, dry eyes and fatigue followed by noise and light sensitivity and exercise intolerance. As a child and in my forties I had asthma and frequent urinary tract infections through my adulthood.I also had uterine fibroids and had a hysterectomy when I was 52. No other health problems. I'm 62 now.

How was it determined that you need the saline IV. I think it is a wonderful idea. Every time I have gotten a saline iv I have felt better. How did you make it happen?

I was not on an antibiotic before POTS but think there may be a relationship between an antidepressant that I was on and the onset of POTS. My first symptom was sleep maintenance and I was put on Trazadone. I started feeling palpitations and tachycardia at that time. I went off the Trazadone and several months later was put on Lexapro and my symptoms started to get worse. I probably should have started a new thread for this topic but since we are talking about medications that may have a relationship to the onset of POTS maybe this is appropriate. Lynne

I recently went to an autonomic specialist who prescribed amitryptiline and coreg as a treatment for autonomic dysfunction. I have been on these meds for six days and am so confused about whether to continue. I have gone to four cardiologists in the last six months and between them and my primary they have suggested five different treatment plans. My regular cardiologist prescribed attenolol and midrodine, the cardiologist that diagnosed POTS in January said attenolol as needed; one POTS specialist said no beta blocker just use midodrine, and the latest autonomic specialist said coreg, midodrine, and amitryptaline. My primary originally said attenolol but values the opinion of the autonomic specialist and said stick with his treatment plan. I've been on this treatment plan for six days and I believe my heart rate is higher than usual ( I am attributing this to the amitryptiline). I have never fainted before but came really close today (and I am attributing this to the coreg.) The symptoms are frightening and I don't know if the new meds are making things worse.I know everyone is different but I'm wondering if anyone else has tried this combination of meds and what was the result. Lynne

My doctor ran a genetic test and the results were ACE D/D homozygous for deletion mutation. The interpretation in the test results state that ACE is am important regulator of of the rennin-angiostatin-aldosterone system and as such plays an important role in blood pressure regulation and electrolyte imbalance. It goes on to state that the D/D genotype has been associated with an increased risk of cardiovascular disease. I am uncertain as to what this means concerning dysautonomia. I have had a positive TTT for POTS. I have seen many posts about rennin, angiostatin, and aldosterone but am not sure what this all means. Help anyone? Thanks. Lynne

Thank you so much. I think that my neck pain may be one of the reasons for my dysautonomia. Now I just have to convince the neuro surgeon to give me the epidural against the advice of my cardiologist/ANS doctor.

It has been suggested to me that I need an epidural for cervical stenosis. My local ANS doctor said it would not be a good idea because of the cortisone that will be injected. I probably will need an epidural for my back as well but have not gotten the MRI yet. Has anyone had an epidural for back or neck pain. Did it affect your autonomic symptoms?

Sue, is your POTS caused by an autoimmune disorder? I think mine is and I always wonder if I get fewer colds, sore throats,etc. because my immune system is working overtime.

I just looked up the diet and it looks great. My question to you is about salt loading. The diet discourages use of salty foods. I would love to try the diet since I believe my dysautonomia may be autoimmune but I am concerned about getting enough salt. How are you handling this. Lynne

What a great idea. Definitely will do this. Thanks for posting. Lynne

I had a POTS doctor suggest to me this week that there is a possible link between orthostatic intolerance and cancer. Has anyone ever heard of this or seen research in this area? The dinet website suggests tumors as a possible cause but it seems they are endocrine related tumors and not necessarily malignancies in other parts of the body. This came up because I am over 60 and have been suffering from POTS since last year and apparently the average age of onset is under 30 so this brings up red flags as to why. If anyone knows anything in this are I'd appreciate your help. Lynne

I get chest pain too and sometimes my resting heart rate is low in the 50s. What does the chest pain feel like? Mine feels like a swelling and a tightness in my chest. No doctor has been able to tell me what that is. Also, sometimes I feel that my heart is racing but when I take my pulse it is normal (60s or 70s). If anyone has been able to identify what these symptoms are caused by, I would like to know. Thanks, Lynne

The doctor who diagnosed me said I had low blood volume but I have no idea how he knows because the test that you described was not done. Once you are diagnosed as low volume what helps? Lynne

I was diagnosed at a few days short of age 62 this February. My symptoms came out of the blue with no surgery, no virus that I know of or anything else. It is possible that my symptoms are connected to an autoimmune disorder since I have many of the signs and symptoms of Sjogren's syndrome but without the blood work to back it up. So far no doctor has blamed my illness on old age. Lynne

Hi Naomi - I had a holter monitor also but no premature beats just the rapid pulse. I too have the pressure feeling in the chest and have mentioned it to the cardiologist who says it must be something else, not my heart since all heart studies (echo and stress test) have been normal. I would really like to know what that pressure feeling in the chest is also. Lynne

Hi everyone- I have a question and would appreciate your input. I have been taking atenolol for about two months. It has lowered my heart rate but while standing or sometimes even sitting it has lowered my blood pressure to 100/70 or even 90/70. I have started to feel faint when this happened. My cardio just prescribed midrodine because of the low pressure and suggested that I also keep taking the atenolol for the high HR.. Right after I spoke to him I got a high reading for blood pressure of 130/85 while sitting. Not sure what to do about the midrodine because I don't want my blood pressure to go too high. It seems my blood pressure which had been consistent for a while is now swinging in both directions. Does anyone take midrodine on an as needed basis when you need to be standing or sitting for long periods? Lynne

Hi everyone - When I lie down I get a strange pressure feeling in my chest, more on the left side. It feels like a swelling and tightness. Could it be blood pooling in my heart? I have POTS and my blood pressure tends to drop 20 points when I stand for 10 minutes or longer and my heart rate increases by at least 30 pts. I have been diagnosed with a TTT but I am having trouble getting an answer from doctors about this strange feeling in my chest. I have had an echo and a stress test and everything seems to be okay. Any ideas? Lynne

Hi Janna - Yes, I do get really weak. After any activity, even for half an hour, I need to lie down for hours. I have recently been sent to a neurologist who is testing for several neurological disorders because of the weakness. To answer your questions about meds - I am taking 12.5 mgs for attenolol and 5 mgs. ambien. My doctor has prescribed flexoril, but I rarely take it because it increases the fatigue. Also, I was recently prescribed Savella which is for fibromyalgia,(not even sure if I have that) but I shook all day from it so I probably won't take it again. Lynne