SSRI not good in all Hyperadrenergic Cases

[Guest tearose]

This is just my experience and opinion. Please remember that my words are not to be taken as "official" or "harsh". I also appreciate learning from you!

I really looked into this and wanted to share what I learned. This is a hot issue for me because I live and deal with this on a daily basis. This is my dysautonomic demon. Please remember that no two of our bodies are the same. My norepinepherine levels alone get extremely elevated. I have denervation which causes this. This happens after ones baroreceptor reflex fail to hold blood pressure. My adrenals must respond this way to ensure I get adequate oxygen to my brain. If I took the SNRI or any other type of SSRI I risk having bigger problems than I now have!

SSRI's and SNRI's would be dangerous for me to take!

I recently learned that antidepressants can cause problems with sleep and I already have documented sleep problems!

I had a sleep study a year ago. I have hundreds of awakenings (not-apnea and not-restless leg)

that leave me with fragmented/ non restorative sleep. The field of autonomic dysfunction is still so new that they don't know how to interpret my sleep study yet! I was invited to repeat the sleep study so they can try to use additional tools to measure what happens to me! UGH! I'm not even sure they would understand after they get the new data!

I am suggesting that we must have a real deep and clear picture of the kind of dysautonomia we have AND all the possible side effects before we develop any treatment plan. Also very important is that once we have a plan it will have to be adjusted and changed over time as our bodies change or we get sick or we improve...nothing remains constant. I wish there was a simple pill or several that someone like me could take and that would make life much easier for me! The reality is the "cure" as they have in current day medicines are more dangerous than my symptoms!

I realize I can function without POTS medications whereas someone else may not be able to.

I also have changed my expectations to accommodate my challenges.

I believe we all must choose based upon our body, our experience and our knowledge.

I MUST use compression garments to act as my baroreceptors if I want to feel better and function more normally. They are no picnic to get on and off and they are not covered by insurance. Well, nothing with us is easy... My point is there is cost/benefit analysis that we each must do before we put anything into or on our body.

I made the choice to avoid dangerous side effects / or the possibility of dangerous side effects and use a non-invasive treatment plan. I have used a plan that depending on my stamina includes: heart monitor, bp monitor, compression, fluids, electrolytes, vitamins and nutritional supports...

In summary, my particular concern is for those who are desperately searching for answers and a new treatment plan. Please know as much about what the mechanisms are that are causing your type of Dysautonomia. Know the consequences to your body and mind of BOTH taking a drug or not taking a drug!

thank you for letting me share, tearose

[calypso]

Tearose,

Thanks for sharing this. I realize that my idea for Ernie to try an SNRI probably set off the red flag for you. I was under the impression that it's not that the SNRI raises your norepinephrine level so much as it balances it out. Is this not correct?

Obviously, I am no medical expert; I am just wondering if it's worth trying drugs like these as a last resort when you spend most of the day fainting and feeling not far from the plague. I definitely did not mean to sell these drugs as a quick fix or anything of the sort.

But thanks for your advice. How would I know if I had high norepinephrine levels? What tests do you have to do? Is the 24-hour urine not a measurement of this and epi?

Amy

[Guest tearose]

Hi Amy, thank you so much for understanding. It is frustrating that there are so many ways we can exhibit our pots so we can't blueprint our treatment plans...

Anyway to answer best I can...The SNRI can do it's "balance" too well. Meaning the norepinepherine is there to force the chemical reactions that will force blood and oxygen to the brain. It is the body making a correct response. In me or people like me, we have to work on the "abnormal condition" not the "normal response". My abnormal condition is failure of the baroreceptor reflexes and failure of the splancnic nerves. So I must focus on improving the work of the baroreceptor reflexes and the splanchnic nerves, not the norepinepherine dump.

It is an amazing feeling when I am fully in compression and feel the "dump" of norepinepherine like a wave come over me and then I realize my compression is working ....I still feel the dump, I just don't respond as ferociously.

Okay, your question on how to get the right test...No, this was not found in the urine test! This was found in the Specialized Catecholamine Test, which is done over about 1 1/2 hours. Your blood is drawn over a period of time in a quiet room. First blood is drawn upon arrival. Second blood is drawn after you have rested in a darkened room in a bed. Third blood is drawn after sitting up for a time. Fourth is drawn after standing still for 10-15 minutes.

The bloods have to be sent to a special lab for analysis. I had mine done at Mayo.

(Don't let this deter you , sometimes Mayo can teach your local lab how to perform the testing and how to send the samples in specialized containers)

As we unravel these issues for ourselves I hope we are helping those who come after.

warm regards, tearose

[Laura]

Tearose, thanks for this! You have a way of making things so clear. I have thought about this often. If the body is responding this way for a reason, and we are not treating the reason, but the symptoms... is this going to make things better or worse. It is a tricky thing. Thank-you for your insight. It is always appreciated! Laura!

[Guest tearose]

I'm sorry, I never got to the pro case for SSRI or SNRI in hyperadrenergic dysautonomia:

From my understanding and experience the case where these drugs may be helpful is when a person has all "normal conditions" and an "abnormal response". Meaning that if the body is mechanically, all fine and the response is "abnormal" this person may be helped by stopping the abnormal response.

In summary, we better can treat our (hyperadrenergic) dysautonomia when we understand whether we have:

1) An abnormal response to a normal condition

or

2) A normal response to an abnormal condition

Unfortunately, that may not be an answerable question for some and then they must decide whether to try treatment by drugs, behavior modification, both, neither or a combination.

I do feel it is important to view all sides, understand all sides and make educated choices.

best regards, tearose

[blackwolf]

just my 2 cents worth-i can't take most of those (ssri's and snri's) as my body simply overreacted to them. i have tried about a dozen different ones with veried but poor responces. either my liver enzymes shot up like a rocket or i got nasty sick on them, or nothing happened at all.

blackwolf

[MomtoGiuliana]

Thanks tearose for your thoughts.

I think this SSRI issue is one of many that demonstrates how little is still understood about POTS causes and treatment. My specialist told me, when he started me on the SSRI two years ago, that only about 50% of POTS patients benefit from SSRIs and it is not understood why. But, because so many do benefit, he starts all of his patients on them to see if it helps.

Treatment is *definitely* not a one size fits all approach. Once we get the general medical community to accept and recognize this condition, probably the next hurdle will be getting them to understand the complexities of treatment. I say this from my experience too. I finally found a GP who "knows" about POTS, but his statement to me was, something like, "well after several months on an SSRI, POTS will generally go away". I guess this has been HIS experience as a physician--but it displays a sad want of understanding!

Katherine

[Gena]

Hi Tearose,

Thanks for this enlightening perspective. My frustration, as well as probably many others on this forum, is that we don't know what mechanisms in our body are casuing our POTs, which makes it difficult to treat. I went to Mayo in Jacksonville to find the "cause" or at least gain insight into what's going on in my body. After many tests, I came away with no answers. (From what I've read, I think the testing abilities, equipment and the neuro I saw at the Mayo in Jax were not as adequate as those at the Minnesota facility)..They did not do the blood test your mentioned - Specialized Catecholamine Test. They only did the urine test, which was normal. Any way, for the most part, I feel as if I wasted my time and money!

I am glad that you were able to learn about the exact physiological processes taking place in your body that contribute to your POTS. Did you go to Mayo in Minn. to determine this? You must have had a very good doctor. I'm just curious as to what other tests you had. Bottom line is, how do we determine if we are having an abnormal response to a normal process, or vice versa?

If we could all determine this, it would make it so much easier to treat POTS!

I wish there were more doctors out there who are really interested in evaluating what's going on in the body that affects the POTS symptoms, in order to create a better treatment plan for that individual. Like you said, we are all different and respond differently to various treatments.(We're all like little snowflakes! )

[Guest tearose]

Hi all,

Yes Gena, I went to Mayo,Minn. Go to the thread by ernie to ginger to see the tests that were most important in my dx.

Maybe I need to re-mention that I was out there in Minn, in 1992 and they had no real understanding of what was happening in me or this new field. It was after my many years of life/struggle with POTS and getting better at being assertive/diplomatically demanding that when I returned to Mayo in 2003, I finally got the right tests and helpful answers.

I suggest we "hear and understand" the difference between asking the doctors to figure out the "first cause" of our dysautonomia, and what is "causing it now". Meaning,we would appreciate knowing whether the dysautonomia began from birth, an accident, the flu, a virus, and started the initial process but much more important and helpful is knowing what begins the immediate cause/cascade in out bodies today. What are the mechanisms that start it now.

Ideally we someday will have both answers...it is one of my hopes.

In the meantime we snowflakes have to help each other to keep from melting!

...(Visions of snowflakes with cooling vests and microwaved slippers)

best regards, tearose

[yogini]

Tearose,

Thanks for bringing up such an excellent topic. It's so true that no two of us are alike.

I just wanted to add to Gena's posts that, with the tests that are currently available, for some of us it's just not possible to determine what's wrong in our bodies. I went to Mayo, MN and had the tests you mentioned in your other post, but the doctors there couldn't explain what's going on in my body to make my heart beat too fast. I think, even if we have doctors that want to help us, science is not quite there yet to give many of us the answers we need. I truly hope the technology will continue to improve so that we will have better answers and better treatments.

-Rita

[Miriam Poorman-Knox]

I just returned grom Mayo Mn and they did not do that test on me. I know that my heart is a problem. This is being treated. Miriam

[Guest tearose]

What we really need is more dedicated research in this field. But we have to find a non-political, non-pharmaceutical, non-biased, institution to fund the research. That is a challenge!

We need someone "important" to be diagnosed with a form of dysautonomia! That would move our cause lightyears ahead into finding answers.

enough said, tearose

[DawnA]

This is an interesting topic. We are all so different. I just went off of effexor and my tacycardia was bad. I have been very POTSY. I don't know if is from the withdrawal or if I need the SNRI. I took an effexor today and I am doing better, but I am reluctant to say it is because of the effexor. It is soo hard to figure this stuff out.

Dawn

[avais1]

What a great topic. I loved reading all of your posts. I learn so much here. I'll share my two cents on the SSRI and the SNRI.

I had the catecholamine test at Mayo, MN. You will think me strange, but this was my favorite test . All I had to do was lay down and doze off, and since they put a port in my vein, they didn't even have to bother me with the blood draw. I could feel it in my gut though, every time they drew, I got a little nauseated ( I was hypovolemic at the time - but at the time I didn't know it, or even know what that was ).

Anyway, laying down, my cetachols were normal, in the 200's. Then I stood up, and they shot to almost 800. And yes, my little heart was a racin' ). Afterward, I met with Dr. Low. No SNRI's for me, my norepinepherine was too high as it was (SNRI's work on the norepinepherine transporters).

I take Lexapro, 5 mgs, which is an SSRI, meaning it hits the seratogenic receptors only. It was **** to get me on it. I thought I was going to die. Before that, I had tried Paxil and Celexa, only to quit 48 hours later because I felt like my stomache was being ripped in half! So in my experience, not all SSRI's are created equal. My doc made me tough it out, as it was this or nothing else. I made it - thank goodness. I have been on for 2 years now, and it has helped me immensely. I asked Dr. Low why this is, and he told me that neurologists do not really know exactly why it works, as off brand use of SSRI's has really not been studied.

Hey, when you are desperate......

[Guest tearose]

I'm glad too we could toss this topic around. Not to get off topic, but can you imagine how much we could learn with each other at a conference? Another hope of mine...

Avais, did you have higher than normal levels of serotonin? I did not have elevated serotonin levels.

Gena, I went to Mayo for answers but it was during my discussion with the Neurologist that we realized that this blood test would be helpful. After he saw the results of this bloodwork, he then ordered the thermo-regulatory sweat test. It is not uncommon that one test result will lead to the next and so on until a pattern forms. That is what makes me a fan of Mayo...you can keep going on till they figure it all out...in a matter of days or weeks. As compared to months with local doctors who don't know much or even talk to one another much.

bye for now, tearose

[avais1]

You know, I don't think they measured my serotonin levels ! I think they were just desperate to try something.

One thing about my Mayo experiences is that I informed the scheduling desk, and Dr. Low, that whatever tests they needed to do was fine, but that I could only give them 2 days or I'd be fired from my job. I'm not sure how they did it, but they crammed all tests into those two days and got me back out the door. So for anyone else on a time constraint, give it a try.

[DawnA]

Wow this gives me hope on feeling better someday. My Dr increased my Wellbutrin last fall, when my depression got worse. I am also on effexor. I really think the Wellbutrin has made me so much worse. I have tried to slowly go off the antidepressant, but I got very sick. I am hoping Mayo can give me more insight and test my levels.

I am not seeing an autonomic neurologist, but would like to be tested furthur. I have had the TTT, theroregulatory test and Q sart. Is there anything specific I should ask for such as cachecolines....??????

Thanks Dawn

[StaceyYount]

Hey all,

Here is my two cents. I am not sure exact;y what type of POTS I have but it has been mentioned the hyperadr???(sp?) sorry.Also a post viral nueropathy was what Grubb thought. Brain Fog is very bad today sorry. Anyway They tried me on every SSRI known to man for 2 years. I kept telling them i feel worse but they didn't listen. Finally after long struggles they took me off it by accident and do you know my energy level shot up at least 50 percent. I was no longer lying in a fetal postion in bed unable to move. So if a doctor even hints at a ssri I say NO! But how could i have known this except that one day at a hospital they did not have a record of me taking it so they did not give it to me. Pretty wicked withdrawal but since I did not know that that was what it was I thought it was jsut POTS. I will never take a SSRi again.

tearose you are so right the information that we could give the doctors would be amazing if they would jsut listen.

It is strange how each of us is different yet the same.

Stacey