What Symptoms Are Common With High Norepinephine Levels?

[ramakentesh]

if there is dizziness supressing NE might make the person feel worse.

[Loulou]

My test was normal too,but I have hyper symptoms. I don't understand it either.

[Psalm 23]

Interesting discussion. There is still much to be learned and hopefully in time we will have answers to all of those questions. I have for the better part of my life been very anti -medication unless absolutely necessary so I am still shocked when I realize what I have been reduced to in terms of the number of medications I am presently taking. A degree of desperation sets in seeking something that will provide some symptom relief. The extreme jittery ( feeling like you want to jump out of your skin feeling ) is pretty horrible and exhausting. The tremor in my hands would get so bad I could hardly use them. Other then medication and sitting down what else helps ? Inspite of how immensely helpful clonidine has been I do have my concerns about long term use. I have been on it for 18 months but have already started to notice old symptoms returning accompanied by new ones. My thought was that if for some the NE rise is a compensatory response that eventually it would overide the medication suppression especially if there has been condition progression. I wonder if taking mestinon along with clonidine helps address the symptoms that might have worsened when the possible NE compensitory mechanism was altered. Just some thoughts. There are so many complexities that go along with this disorder.

Janet

[issie]

Janet,

Those are good questions too. If we have suppressed the NE and it starts to try to compensate again ---will it make the numbers have to go even higher to counter-act what we are counter-acting. Oh what a circle that would be? But, with your NE levels being so terribly high - it's almost like you wouldn't be able to cope with the NE being so high - on an emotional level. At that point you have to do what you have to do. I'm like you ---resistant of taking meds. But, over the years have come to realize that sometimes, it's better to have "quality" of life - then maybe quantity. There comes a point - where you worry less about the consequences and more about just living life in the best way possible. I guess that would depend on your age. If you have a lot longer to live, then the consequences may not be worth the risk. It's really hard to know what to do and which direction to head off in. I have tremors too and when my tachy and surges are going on my tremors are awful. It's almost more then one can take sometimes. But, somehow --we all are some very strong people. Most of us manage quite well - despite it all.

Issie

[looneymom]

I think part of our answer is trying to figure out how to control the stress levels encounter by the body. This has to be the most uncontrollable part. My son has got that cough that comes when the weather is cold one day and then gets extremely warm the next day. Most of the time it goes into croup, however his body seems to be fighting it off. I'm not having to give him cough syrup during the day, just at night.

The POTS body just does not handle changes/stress very well. I noticed that for the 3 months last year when my son was able to walk, he had to stay in a routine. If he was off, it threw his whole day off. When he caught the flu in January, he's not been able to get back up to the level of functioning before. However, since he is in the teenage years and still having growth spurts. This does not help either.

One thing that might help all of us is to check and see if a urinary test is available to measure the levels. Not all medical labs do this test. I have read that functional and naturopath doctors are using this test to check for NE levels. They are having their patients retake the test every 6 to 8 weeks to see if the levels are high or low. I'm checking into this for my son. From what I understand, if the levels are low in the urine, then the levels are most likely low in the body.

[Psalm 23]

looneymom. You are right in that the POTS body seems much more vulnerable to acute illnesses and unfortunately long term residual negative effects from those illnesses. I can't imagine adding in all the hormonal changes that go along with the teenage years. My heart goes out to you and your son as you seek out answers and some kind of effective treatment.

Issie. Thank you so much for your words of wisdom and encouragement. You're right in that we are a very strong group people. I guess I am still on a learning curve as far as how best to manage my condition. As far as strength goes, we know where are ultimate strength comes from.

Janet

[looneymom]

Janet

Thank you so much for your response. My son's cardiologist called last night. He has increased his dosage on the clonidine. Physical therapy session was much better this morning. Did clonidine help you sleep through the night? If it did, how long did it take to make this happen? My son has not been able to sleep through the night since he had the flu? Our neurologist also has him on Lunesta. Both of these doctors are good to work together and really want to see my son get his sleep cycle back.

[Psalm 23]

looneymom

How wonderful that your son's PT session was better. That must have been encouraging. I really hope your son realizes some positive effects from being on clonidine. While it has been immensely helpful for me with some of my symptoms I'm afraid improved sleep was not one of them. I wish I could tell you otherwise but everyones response to medication is so different maybe improved sleep will be a benefit your son will experience. Prior to Mayo I had been taking elevil 10mg at bedtime which really helped me with sleep and pain but I was told to discontinue it as it caused a worsening of POTS symptoms. I was told to try meletonin but it did nothing for me. In the end I was hit with severe post shingles pain, fibro pain and probably small fiber neuropathy and started requiring increased dosages of neurontin. After reaching a dose of 2400mg a day I realized I had started sleeping 7 hour and sometimes 8 hour stretches at a time. I'm really sorry. I wish I had something more helpful to report.

Janet