lgtaylor100

Did anyone ever hear of this treatment for dysautonomia. It is used successfully with anxiety, depression, and insomnia. Since I will be having chemotherapy for breast cancer my breast surgeon suggested this treatment to help with the fatigue since I already am very fatigued from dysautonomia before the treatment. I just want to know if anyone ever heard of it and if so what has been your experience. Thanks for your help, Lynne

The breast biopsy was positive for cancer. Now I have to have a staging MRI and an estrogen/ progesterone receptor test. Shot for stenosis and MRI for breast are on Monday. I will see the breast surgeon and will know more next Wednesday. Thanks for your kind thoughts. Will post when I know more. Lynne

Thanks Naomi I think the pain, the heat and the stress exacerbated the dysautonomia. That's my hunch.

I haven't been on here for a long time, maybe about nine months. I was doing much better with the Ritalin and making sure that I went out and engaged in activities. I still needed rest during the day and needed to pace myself but I was doing much better. Anyway, recently my lumbar stenosis started getting worse and I am in extreme pain and can barely walk. My pain management doctor told me a year and a half ago to see a surgeon but I didn't want to have surgery, so we managed the condition with nerve block shots. Recently they haven't been helping much. Anyway I no longer liked that pain management doctor (for reasons I do not want to discuss in the open forum), I switched to another and he also said looking at my MRI that the stenosis is severe, He will do another shot in three places but he wants me to get another MRI and then possibly see a surgeon. The new shot is Monday and it can't come soon enough. The pain is increasing my dysautonomia symptoms, dizziness, rapid change in heart rate and blood pressure and blurry vision as well as low stamina and exhaustion. Of course, the heat exacerbates my symptoms. In addition to that I had a mammogram and they found a small nodule. I had it biopsied and will have the results in three to five days. So when it rains it pours. That's my update. If you remember me please respond or even if you are new or don't remember me, please respond. I need all of the support I can get.

I haven't been on here for a long time, maybe about nine months. I was doing much better with the Ritalin and making sure that I went out and engaged in activities. I still needed rest during the day and needed to pace myself but I was doing much better. Anyway, recently my lumbar stenosis started getting worse and I am in extreme pain and can barely walk. My pain management doctor told me a year and a half ago to see a surgeon but I didn't want to have surgery, so we managed the condition with nerve block shots. Recently they haven't been helping much. Anyway I no longer liked that pain management doctor (for reasons I do not want to discuss in the open forum), I switched to another and he also said looking at my MRI that the stenosis is severe, He will do another shot in three places but he wants me to get another MRI and then possibly see a surgeon. The new shot is Monday and it can't come soon enough. The pain is increasing my dysautonomia symptoms, dizziness, rapid change in heart rate and blood pressure and blurry vision as well as low stamina and exhaustion. Of course, the heat exacerbates my symptoms. In addition to that I had a mammogram and they found a small nodule. I had it biopsied and will have the results in three to five days. So when it rains it pours. That's my update. If you remember me please respond or even if you are new or don't remember me, please respond. I need all of the support I can get.

I just read that someone won the Nobel Prize for work on the Fight or Flight mechanism. The research was on the "G protein coupled receptors". Does anyone know if this has anything to do with us.

I had significant anxiety prior to getting POTS. I do not specifically know the cause of my dysautonomia although I believe that family and work stressors clearly played a part. Any stressful situation now makes my dysautonomia worse although it is hard to stay entirely away from all stressful situations with an elderly mom, 3 daughters and five grandchildren.My mom and my daughters are becoming more and more aware of my sensibilities and that helps. Nevertheless, I cannot avoid all stressful situations. I do not work any more so obviously the work stress is gone. I was a psychotherapist and I believe I suffered from too much compassion and had difficulty filtering out my clients' problems. Also there was always a crisis with family and I felt compelled to help out. I do feel slightly better now. It is Ritalin which has made somewhat of a difference. It certainly is no cure for me but it help a little with the fatigue. Also I am learning coping techniques with family issues and finding ways to cope with my disability with the help of a certified health counselor, I hope that others of you who have this anxiety issue with dysautonomia are able to find some relief.

I get very very tired.

I'll be your friend on facebook too. I play words with friends a lot so if you want to do that it could be fun. It passes the time and helps I think with the brain fog. Lynne

I was getting these adrenaline rushes in the early morning, but like Kim I am now taking Klonipin and it helps. I still wake up at 5:30 though. Seven would be much better.

Did he propose a treatment if the test finds something?

I've noticed for a long time that I feel better in the pool. The cold water plus the pressure helps vasoconstriction. I wish I could live in the pool.

I had high CO2 levels on my last blood work. I need to look at my labs to find out how high. My doctor didn't even mention it. Lynne

I take a very small dosage of Coreg which worked for awhile to control my heart rate but its not working anymore. My blood pressure does not drop low so my situation is different from yours. I went in a cold pool yesterday and it helped while I was in there but as soon as I got out it started again. You are not alone with this. My heart rate is over 100 somedays before I even get out of bed,

Puppy - You absolutely make sense. I wonder the same things. Is it anxiety about the illness or is it the autonomic nervous system going wild. I actually was a therapist when I was able to work and I have to admit that it is hard for someone not living with the illness to understand what we are going through.PM me if you would like. Lynne

I would say fear. Today at my integrative doctor they took my blood pressure and it was really high for me 165/100. Then the nurse asked me to imagine a relaxing scene and it came down considerably 140/90 (still high, but better). It' s amazing what the mind can do.

Hyperpots8 - I take 20 mgs only of amitryptiine. I have asked both my primary and my integrative doctor if this medication could be causing these symptoms and they both say no, not at that low dosage. Suprisingly, it was an autonomic specialist who prescribed it in the first place. I tend to agree with those of you who say that it could be causing the problem and I am going to ask for a tapering schedule. Thanks everyone for your help. Lynne

Hyperpots - I have been on the amitryptiline for a year and two months. The shakiness has not been there the whole time just recently within the past month or so. What has been your experience with amitryptiline? Lynne

Thank you so much for your response LindaJoy. It helps to know that others have experienced this and that it does go away. I didn't post much on this forum during my short period of stability, but I always read the forum. I need this support group desperately now because no one who isn't going through this understands. I am interested in what others have to say also. My integrative doctor asked me to come in Wednesday morning so I think he is sensing my urgency. Lynne

Hi everyone - For a while I was somewhat stable and then about a month ago I started experiencing shaking and internal tremors in the morning. It is very frightening. Sometimes this shakiness lasts most of the day and sometimes it goes away followed by exhaustion. I don't know what to do about this. If you read my other post, my integrative doctor suggested 5-HTP for low serotonin levels, which seemed to make me very sedated. I decided not to take it for a few days and see what happens but the shakiness is worse. My heart rate is high in the morning, about 120 just getting out of bed, I have POTS, do not faint, and do not suffer from low blood pressure. My blood pressure remains stable most of the time and I do not have high norepreniphren levels although I have been tested as having 4x normal sympathetic excess. I have been sick for over two years and appear to be getting worse. I feel weaker and am even less functional than before because of the tremors and exhaustion.I was getting out of the house for a few hours every day and now I can't. My doctors are good and are understanding but seem to be at a loss as to what more they can do to help me. I take 10 mgs.Midodrine 3x a day., 3.125 corgeg, 20 mgs amitryptine, and 5 mgs. ambien, .25 ativan. Also, many supplements. I am not looking for medical advice, just for some strategies that may help or your thoughts. It is very scary to see your symptoms getting worse. The worsening started with some additional stressors and the onset of the hot weather. I do stay indoors on the hot days and try to exercise, walk or do pool exercises in the evening. For a while that helped but not anymore. Lynne

Has anyone tried 5-HTP. I went to an integrative doctor and he concluded through neurotransmitter testing that my serotonin is very low. I have had trouble with SSRIs in the past so the recommendation was 5-HTP. I have been using it at a low dosage for three nights now and find that it is very sedating. I am already profoundly fatigued so this feeling of sedation is not welcome at all. Has anyone else tried this and what were your experiences?

That is really interested about the heels. I am dysfunctional pretty much all of the time but went to a wedding Saturday night and wore heels and I felt okay. (or maybe it was the cold, cold room).

Has anyone addressed this hypothalamus issue with their doctors. It seems very logical that problems with the hypothalamus and pituitary are involved in regulating the hormones that cause this circadian imbalance. I have not specifically addressed this with any of my doctors yet. I am wondering if anyone has and what was the outcome?

Relax - Have you been diagnosed with hyper pots? In the morning I feel exhausted but ramped up at the same time. It is a horrible feeling..

I started this post over a year ago and am still suffering from the same symptom despite meds. I really can't do anything until late afternoon. If I do something earlier in the day I am extremely dizzy and then crash and can't do anything the rest of the day. My doctor wants to give me prednisone and I am very hesitant because I think this will make me worse. I am suffering with hyper pots. Any thoughts about the prednisone? I get nerve block shots every two months for lumbar stenosis and feel somewhat better generally for 3-5 weeks after the injection. I don't know if it is the cortisone in the injection or something else that is making me feel a little better for that period of time. Any thoughts on this? I am really confused.