Question about hyperadrenergic POTS and SSRI's

[LindaJoy]

Hi, everyone.

As anyone who has been reading my posts for the past few weeks knows, my doctor started me on Celexa. I'm now on 5mg a day, and my POTS is getting progressively worse. I'm nearly bed ridden again.

I just got a post from someone who said that for those with hyperadrenergic POTS, SSRI's can actually make your POTS worse by causing the body to produce too much epinephrine. Does anyone have any further information about this?

I've never been tested for hyperadrenergic POTs. What is the test for that? Actually, what are the symptoms? I can feel adrenaline going through my system all of the time. My doctor at the Cleveland Clinic said it's actually my feeling the blood circulating through my system at a very rapid rate that I'm feeling. Does anyone else have this?

If I do have hyperadrenergic POTS, are there any anti-depressants out there I can take?

Thanks.

LindaJoy

[Ernie]

Hi,

YOu have to have your catecholamine tested in the supine and upright position.

I tried Paxil, Celexa and Lexapro and they all made me worst.

I have extremelly severe hyperadrenergic POTS.

[dawn]

When I was diagnosed it was by a 24 hr urine collection which showed elevated catecholemines in my urine. I have been on SSRI's twice, both times for a couple years. Prozac didn't seem to do much. But, effexor which is for serotin and norepinephrine worked well for a couple years. The second time I tried it the stomach distress caused me to quit taking it. Cymbalta a new SSRI is the one they are recommending now. I haven't tried it. I'm not on any SSRI now, haven't been for about 5 years.

They help some people and others they don't.

Maybe you could try a different one if Celexa doesn't seem to be working.

It's really an individual thing, no way to predict if they will help or not. But worth a try.

Dawn

[Poohbear]

Linda,

Just wanted to clarify something...it's the increase in Norepinephrine that tends to be the "culprit" not so much the epinephrine.

[MomtoGiuliana]

I felt worse (to the point of being bedridden) for the first several weeks on an SSRI and then gradually improved. My POTS specialist said that this is normal. He also said that an SSRI only helps about 50% of patients with POTS, so it may not help you, but you may want to give it a few weeks to see if it does help.

Katherine

[vemee]

I have been on cymbalta mainly for depression but it also has helped pots. I have been off of it for a month for a series of tests and can really tell the difference. It did keep my blood pressure from dropping at night, now that I'm off my blood pressure will start dropping as I start to sleep. I use to think it was anxiety caused by depression but when I took my bp I found the systolic was less than 90 and the diastilic was around 50. Cymbalta also seems to take away the burning or stinging pains I get on my legs and arms.

[halmad85]

I haven't been diagnosed yet, but I wanted to say that when I tryed Celexa, it made my symptoms of POTS so much worse. It actually sent me to the ER. I hope you feel better soon.

Hugs,

Jen

[appleby]

You could ask your doctor aobut using Prozac instead of Celexa. Celexa is not the best choice for someone with POTS. Prozac is activating and can help with fatigue, Celexa on the other hand will put you to sleep. I have had hyperadrenal POTS for a long time, and have had good results with a combination of Beta-blockers, Prozac (1/4 to 1/2 of a pill), and Provigil. Provigil is better then the stimulants for fatigue as it dose not effect Norepinephrine as much (like we need any more of that).

However, I think you really have to experiment, since we each have slightly different underlying causes and degrees of dysfunction. What ever you take start at a low dose and work your way up, we tend to be over sensitive to many medications.

Don't give up on the search for the right medications, trying to control Pots with life style changes is like trying to fly without any wings, you are just bound to fall.

As an aside I just did a squat and stand without blacking out, or even getting dizzy. In the past when I went to the library and realized that the book I wanted was on the bottom shelf, I would just go find something else. It was almost an unconscious decision.

[Wufflebear]

I get that feeling of something flowing thru me too when my heart seems to beat really hard and fast...also I notice my hands and legs feel warm...which is a change.

I have tried zoloft and paxil for about a week each and both made me hugely sick.

[morgan617]

I've just never done well on any antidepressants, but even before really bad symptoms of pots started. So I just think for me it's just another drug where the side effects are worse than the ailment. morgan

[Guest tearose]

Hey Lindajoy, why do you want to treat the hyperadrenergic pots with an SSRI? Are you having problems with seratonin too? Do you know what mechanism is causing the hyperadrenergic reaction?

I have hyperadrenergic dysautonomia which was dx at the Mayo clinic through thermoregulatory testing and standing/sitting/resting blood levels of circulating catacholomines (I forget how that one is spelled) Anyway, you will be more successful in treating your symptoms if you know whether you are having:

1) an abnormal reaction to a normal condition OR

2) a normal response to an abnormal condition.

For me, I am having a normal response to an abnormal condition.

The testing I had done, showed that I have damage to my baroreceptor reflexes and the denervation in my legs and abdomen is causing the blood to pool. I dump tons of norepinepherine and these fine little reflex/nerve fibres are just not getting the signal to constrict!! I make plenty of norepinepherine and need it to survive and get adequate oxygen to my heart, brain and vital organs. I would "crash" and/or not do well at all if I blocked the norepinepherine. I must work on compressing the legs and abdomen to help constrict the nerves.

I just remembered a thread from last february where I discussed this from a different angle. Let me indulge you and paste it here...maybe you will find something useful and I won't have to re-write it..

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!

**********Feb 5, 2005

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

[Christine]

Hello,

I had a tilt test and a drug added to it via an IV. My doctor wanted to see my response as if I just got done running or something physical. Let me tell you it was awful. My heart was jumping out of my body and I could not even complete the test. They began to stand me up and my body reacted so badly they had to stop the test.

I hope you feel better soon,

Christine

[Michelle Sawicki]

There is a paper that was just recently published by Dr. Grubb that explains the different types of POTS and their treatments.

From Journal of Cardiovascular Electrophysiology

The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management

Posted 02/07/2006

Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D.

This is definitely one of the best papers I've ever read on POTS. If you create a medscape account you can access it for free. It has this to say about the hyperadrenergic variety:

The second (and less common) form of primary POTS is referred to as the "hyperadrenergic" form. These patients tend to report a gradual and progressive onset of symptoms as opposed to an abrupt onset. Hyperadrenergic POTS patients report significant tremor, anxiety, and cold sweaty extremities when upright. Many will report a significant increase in urinary output after being upright for even a short period of time, and over half suffer from true migraine headaches. The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as exaggerated response to isoproterenol infusions. As opposed to the PD POTS patients, the hyperadrenergic patients have significantly elevated serum catecholamine levels with serum norepinephrine levels >600 ng/mL. There is often a family history of this disorder. Currently, hyperadrenergic POTS is felt to be a genetic disorder, in which a single point mutation produces a dysfunction of the re uptake transporter protein that clears norepinephrine from the intrasynaptic cleft. This in turn leads to excessive degree of norepinephrine serum spillover in response to a variety of sympathetic stimuli thereby producing a "hyperadrenergic" state that appears similar to a pheochromocytoma.

The hyperadrenergic form of POTS is best treated by agents that block the release of norepinephrine or block its effects. Clonidine is often useful in these patients, starting at 0.1 mg a day and titrating upward. The patch form of the agent is particularly useful as it provides a steady level of the drug for up to a week at a time. Labetalol is often effective, due to its alpha and beta blocking effects. Dosages of 100?400 mg orally twice a day may be employed. Methyldopa is also helpful in select patients. Both the SSRIs and the norepinephrine reuptake inhibitors have been helpful in controlling patients' symptoms.

[ramakentesh]

I would like to make the comment that they hyperadreneric form of POTS is actually conjectural. There is actually fairly limited evidence that the problem with these patients is primary sympathetic overreactivity and not reflex overactivity resulting from abnormal blood pooling.

There are studies that show that in patients where the norepinephrine reuptake transporter was nonfunctional the nerve firing rate did not match the level of plasma norepinephrine suggesting the sympathetic overactivity found in POTS patients that present with the 'hyperadrenergic' presentation may be caused by other factors.

As far as I am aware the only confirmed causal mechanism of primary POTS in patients is the autoimmune denervation variety because antibodies were found in some of these patients.

Other mechanisms have been offered for the hyperadrenergic and vasoconstrictive form of POTS - elevated angiotensin II levels descreasing the bioavailability of nitric oxide leading to reduced whole body blod flow and low blood volume.

[summer]

Hi Linda Joy,

I had a bad reaction to a SNRI, so will not be trying another one any time soon. I know I hear others say that trying a few different ones is a good idea until you find one that is right for you. I'm sure that is true for most. I have not yet gotten up the courage to try another one, and I'm not sure I ever will.

Summer

[Guest GaryRN]

I have read that those with Hyperadrenergic POTS don't tolerate SSRI's and the like very well. I can't find the link or I would post it, but I did see it in 2 articles I believe. I would talk to your Dr. and get off ASAP. I experience just what you are talking about. I couldn't even tolerate pediatric doses of Lexapro and my MD was baffled. It made me sick as **** and lasted well past the 2 weeks that is in the literature. In the end, it made my anxiety way worse. I tried at least 3 SSRI's, and a 2 SNRI's, and a few others. I couldn't even handle tricyclics.

Gary

[Maggie Franken]

Paxil caused POTS for me. Bad(traumatic) reactions to Cerzone, Pamelor, Risperdal. If you have this in your history avoid IV contrast dye, Afrin, betablockers and most antidepressants in my experience.

[Maggie Franken]

Those patients who have POTS and autonomic problems should see a cardiologist and avoid psychiatrists, IMO. Psychiatrists don't know their drugs well and can do more harm than good. I suggest that you ask your cardiologist about sinus surgery too.  In the meantime in my experience avoid most antidepressants, Afrin, betablockers and especially IV contrast.