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Posted

(note: some of this is excepted from my medical blog... I'm too lazy to retype everything)

So I went into the doc's office today to discuss my tilt table results. I got a copy of the results (**** yeah! Concrete proof!) and under the section where it summarizes this called "Impression" it says:

"This is an abnormal study. This is borderline evidence for postural orthostatic tachycardia syndrome. This was no orthostatic hypotension. This is borderline post ganglionic sympathetic sudomotor dysfunction as well.

These findings may be seen in patients with POTS of relatively mild severity."

So what's the solution? Atenolol.

I'm also going off the Florinef because the test doesn't show my blood pressure really dipping and the doctor made a remark about how my blood pressure is actually a little high for a woman my age. The plan is to stop with the Florinef for a week to give my body and chance to cool off and then start with the Atenolol.

I could also be going off the Paxil CR because he doesn't agree with me being on it indefinitely and neither do I but we both agree that this isn't the time to try and withdraw.

Has anyone here been on Atenolol? From what I read (and talked to the doc and the pharmacist) said that this has very few side effects and drug interactions. What has everyone else's experience been with this?

Posted

Were you taking florinef or other meds when you had the tilt table test? If so, that would have skewed your results....(your results might have been stronger without meds). If that is the case, the meds you are taking may be working and you might want to re-consider going off of them. I take atenolol. I do find some side effects - fatigue, weight gain, exercise intolerance. But for me well worth it.

Posted

I've taken atenolol on and off for at least 12 years. The only side effect I've had is increased fatigued, but considering the side effects I've had with some other drugs, I consider that minor.

It does slow your heart down, but make sure you start with a small dose. I started at 12.5 and went from there. Good luck! morgan p.s. one really nice thing about it, is it's a really old drug and very very cheap!

Posted
Were you taking florinef or other meds when you had the tilt table test? If so, that would have skewed your results....(your results might have been stronger without meds). If that is the case, the meds you are taking may be working and you might want to re-consider going off of them. I take atenolol. I do find some side effects - fatigue, weight gain, exercise intolerance. But for me well worth it.

I was sans meds when I took the test... it was a beast because I also had to go off the Paxil as well. I have to admit I was having a good day when I was tested. If it had been on a heavily symptomatic day it probably would've been worse.

Posted

how long were you off of your meds for pre-testing? both have relatively long half-lives & thus need to be out of your system for quite awhile to get accurate test results.

also, just as an FYI, florinef is used by some docs for tachycardia without low BP b/c of the theory that tachycardia may be preventing a drop in BP.

i'm glad that the plan is only to make one change at a time so that you'll have a better idea of what may be helping/ hurting. atenolol can drop BP for some people so that some do better on it WITH another med to support BP, i.e. florinef, midodrine, etc.

B) melissa

Posted
how long were you off of your meds for pre-testing? both have relatively long half-lives & thus need to be out of your system for quite awhile to get accurate test results.

also, just as an FYI, florinef is used by some docs for tachycardia without low BP b/c of the theory that tachycardia may be preventing a drop in BP.

i'm glad that the plan is only to make one change at a time so that you'll have a better idea of what may be helping/ hurting. atenolol can drop BP for some people so that some do better on it WITH another med to support BP, i.e. florinef, midodrine, etc.

B) melissa

I tapered the paxil down and was completely off of it for about 4 days or so. Those were 4 days I'd rather not relive. I was off the Florinef for about 4 days... I don't know if that was long enough.

Even though I won't be taking the Florinef for a while, I'll still have a supply so if I notice my BP getting too low then I have something to fall back on. But thanks for the heads up :P!

Posted

Hi,

I'm going to have some more testing done and was told that if I wanted to be off Fludrocortisone then I would need to half the dose for 2 weeks then stop it completely at least 2 weeks before the testing. Fludrocortisone takes a long time to stop having an effect on your body. You also shouldn't stop taking any type of steroid suddenly. Your adrenal glands can get used to having extra steroid in your body and stop producing as much of your natural steroids, if you then stop without weaning off your body won't have enough steroid and can cause all sorts of problems including very very low BP.

I don't know how long it takes to get Paroxetine (paxil) out of your system for testing but it is a drug that is known to have a withdrawal syndrome. The horrible symptoms you had were from stopping it suddenly. If you decide to stop it again in the future I would talk to your doctor and pharmacist about the best way of slowly reducing the dose to minimize the withdrawal symptoms.

Does your doctor know that you stopped the meds just 4 days before the tilt? It may change how he interprets your results.

Good luck,

Flop

Posted
Hi,

I'm going to have some more testing done and was told that if I wanted to be off Fludrocortisone then I would need to half the dose for 2 weeks then stop it completely at least 2 weeks before the testing. Fludrocortisone takes a long time to stop having an effect on your body. You also shouldn't stop taking any type of steroid suddenly. Your adrenal glands can get used to having extra steroid in your body and stop producing as much of your natural steroids, if you then stop without weaning off your body won't have enough steroid and can cause all sorts of problems including very very low BP.

I don't know how long it takes to get Paroxetine (paxil) out of your system for testing but it is a drug that is known to have a withdrawal syndrome. The horrible symptoms you had were from stopping it suddenly. If you decide to stop it again in the future I would talk to your doctor and pharmacist about the best way of slowly reducing the dose to minimize the withdrawal symptoms.

Does your doctor know that you stopped the meds just 4 days before the tilt? It may change how he interprets your results.

Good luck,

Flop

No one told me exactly how to withdraw from these things. A bit irresponsible on their part but oh well. I knew Paxil had to be tapered (which I did and I still had horrid symptoms), but I didn't know that about Florinef. I didn't withdraw completely until as close to test time as possible because a) I had never done it before and B) my test was run the week before my final exams and I didn't want any adverse effects on my work. Even if I had followed procedure I doubt I would've procured a diagnosis of anything other than "mild POTS" because I know I'm not the most severe case out there. I still managed to land the diagnosis though. I'll bring it up to him at my next appointment though. Thanks for letting me know, next time withdrawl is involved in something I'll definitely be more assertive.

Posted

I actually had already restarted taking Paxil when I had my TTT (I felt so awful off of it, that I couldn't wait any longer to get it back in my system.) And my heart rate still went up 34 bpm. It would have been way worse had I not been taking it. Off of it, my pulse upon standing was getting up to 160 or more.

I'm just glad I still qualified for POTS. If I did another TTT now, I'm not sure it would show up. That's how much Paxil helps me.

Amy

Posted

I take a small dose of atenolol on top of all the other meds. I didn't notice any significant side effects from it. It did help me more (decreased symptoms further) when I started taking it.

So, I think it is a good med to at least try, if not contraindicated.

Good Luck! :)

Posted

regarding stopping florinef, i've been told it should be stopped at least a week before testing but that 2 weeks is better. different docs seem to have slightly different thoughts on this, as well as in regard to whether or not it requires tapering. while it's true that steroids should, as a general rule, be tapered, i have been told by some docs who i trust immensely (autonomic specialists who work with florinef frequently) that depending on one's dose florinef doesn't always require tapering. it was years ago now but when i stopped florinef i was on .2mg daily and stopped without any taper and had no problem. it's a hard call though b/c i think some docs may say "it doesn't matter" solely b/c they don't know better.

i had this happen when i was told to stop (but not taper) an SSRI (lexapro) prior to testing several years ago and it was pretty miserable. i had been told simply to stop it as i was on a small dose. i actually never went back on it (b/c we didn't think it was really helping me in the first place) but if i ever have need to i will certainly NOT be stopping cold turkey!

but i've digressed....

ultimately what's done is done and, in your case, since it did confirm a diagnosis, i wouldn't worry too much about whether or not things might have been a bit different had you been off of meds for longer. it is a shame that there isn't better consistancy/ a more standardized protocol for the testing but ah well...maybe someday.

i do hope your new treatment plan(s) help you feel better & better!

:) melissa

Posted

I'm also on Atenolol and it definitely has increased my fatigue which I didn't think was possible but helps with all the tachy stuff most of the time. I still need to consume a ton of salt to keep my body upright for more than 5 minutes so it might help some symptoms and not others for you. Wish you positive results :)

- Tammy

Posted

I take 25 mg of Atenolol daily. It has helped considerably keeping my heart rate down. I had fatigue when when I first started on it but it did get better the longer I was on it. I also take Topamax and Wellbutrin XL. I think adding the Wellbutrin XL has increased my energy level; possibly each of the medications I take balances the side effects of the others out...

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