davecom

It certainly has something to do with the atenolol. I had awful heart rates again yesterday morning but then in the afternoon they were a little bit better when I saw the doctor (they always are right?). He suggested I cut down to 6.25 mg for a week (1/4 of the lowest dose they make where as I was on 1/2 before) before stopping. I took that 1/4 of a pill and then the rest of the day yesterday had some of the best heart rates I've had period. The doctor was surprised that atenolol was causing headaches since he had never heard that before, but it clearly is in my case. I even got mild ones after taking the 1/4 dose yesterday. Yet off of it again this morning and afternoon, I am much much better in that regard. Okay first walk today was not awful (106 high, 90 average), then my second, I'm back to 140 and an average over 100 for the whole 15 minute walk (24 hours after taking the 1/4 of a pill). Tons of variability again too - even sitting down one second 90 bpm then 75, then 84 changing every 5 seconds. So now I again have to ask myself is this withdrawal or is atenolol fixing what's going on in the first place. I am hesitant to again take 1/4 of a pill today because I don't like going through pseudowithdrawal every morning if that is what's happening. The plan is to try Clonidine when I have completely withdrawn from atenolol.

So my headaches had been getting so constant that I decided to try a day without my 12.5 mg atenolol to see if it was the cause. The headaches were much better and I felt much more like myself mentally. But... big but my heart rates went back to instantaneously going from 75 to high 130s when I stand (and going back down to 90s as long as I kept walking). While on atenolol I had hardly ever seen anything above 120 and often things would stay at 100 max. So... 100s of kilometers of biking, walking 75 minutes a day for the past couple of months an I may no improvement without the beta blocker? Or could this first day off just be some sort of withdrawal? I also felt a bit jittery today. It's a very low dose of atenolol so I'm surprised its impact could be this gigantic. I'll probably take half my normal dose tomorrow again. I thought dice it was already smaller than the smallest manufactured dose what I did today would be safe.

Congrats! Now get on with your life

Alan, any updates?

I wonder if they ever carried out the study they propose.

Interesting that the study results have still not been posted... Is that typical 5 months post completion?

Agreed, a case study would be very helpful.

Thanks for reading it and reporting back. Yes, it does sound pretty disappointing, and not at all useful.

maia, thanks for sharing your story... let us know what comes of everything. I too had this all start with a painful area on the bottom right past my last right rib. I also have elevated kidney hormones. I'm very interested in your progress.

I have lumps in my rib cage too. I have wondered about sarcoidosis as a possible cause of this and a lot of my other stuff, and maybe even an underlying condition causing POTS. Pure speculation though.

Great point, Dana. Where does this leave us in terms of treatments? Does a centrally acting agent like clonodine/beta blockers therefore make more sense for us than vasoconstricting peripherally with something like midodrine if our recovery time and startup time is fairly instant?

This is my understanding, so I could be wrong: A beta blocker like Metroprolol blocks the beta receptors that catecholamines are binding to in order to tell your heart to go faster. However, whatever your underlying condition is, is still going on - for example if you're producing excessive amounts of norepinepherine, the beta blocker is stopping that excess from causing your heart to race. However, whatever else that excess is doing is not being fixed. In other words it's not stopping the production of the catecholamines, just stopping them from racing your heart. I too am on a beta blocker, atenolol, and while it helps lower my heart rate during the 4-6 hours after I take it, it also does not resolve my other symptoms. It makes me tired too!

Research from Cleveland Clinic http://ftp.benthamscience.com/open/tocmj/articles/V007/36TOCMJ.pdf What I found very interesting was that the faster you "achieve POTS" the more likely you are to have a faster recovery time back to a normal heart rate upon sitting down. They speculate in the discussion that this indicates your POTS is likely centrally mitigated (as opposed to peripheral vasculature).

The Neuropsychological Profile of Postural Orthostatic Tachycardia Syndrome: Sibling Case Study Ashlee R. Loughana*, Jeremy Hertzaa & Robert Pernaa June 14, 2013 http://www.tandfonline.com/doi/abs/10.1080/09084282.2012.753075#.Uc48_hYc2aQ Can anyone get access to the full PDF and report back on the details?

My suggestion would be to see how often a 30 bpm + heart rate change is occurring when you stand up. You can get a cheap heart rate monitor for $30. Put it on and check it out during your day to day activities. Basically, I'm suggesting doing a bunch of poor man's tilt table tests yourself over the course of a couple weeks. There's nothing special about checking hear rates that requires a doctor. Best of luck with finding the source of your orthostatic headaches! That was one of my first symptoms and I was very frustrated trying to get answers from doctors. I know I have POTS now, but I'm still not sure how exactly that relates to the orthostatic headaches since the literature disagrees on cerebral hypo-perfusion and such.

Joann, loved your post. I can really relate to your first paragraph!

But who's going to try it next... And who will volunteer to take some placebo... Just kidding. But really, would love to hear if anyone else tries this! Alan, glad your hr is staying well at least.

"But then again, can life ever be the same for me as i have lived in this world for so long?" I think it will. We live in 2013 and we're in our mid to late 20s. I honestly do not believe we will go another 40 years without medicine being able to further help us (should we be so lucky to not die of something else). And yes, we maybe part of the 50% that get better on our own. I think you're right though, one's mindset must be confined to realistic boundaries and realistic short term hopes. Yet long term, it is the hope of a return to normal, or near normal living (and what that means for me is pre-1 year ago living) that keeps me going.

Alex, you are a saint and a such a valuable resource.

Interesting thoughts... But you depress me because I read some of your earlier posts months ago and it seemed like you got better with a lot of effort and you were someone that gave me hope. But I can relate. Where is that vivacious person? Can I appreciate surviving rather than thriving without him?

Think what spinner wrote sounds like some great advice.

Another old treatment for neuropathy is B12 shots. You'll notice the active form of B12 is one of the three ingredients in metanx. I've also wondered why traditional treatments for neuropathy (regardless of the cause) aren't attempted more with POTS people. I'm interested in exploring this avenue too.

Hey, whatever works! Congratulations, I join everyone else in being happy for you. Keep us posted on how you progress. Who is going to be next to try this?

I changed the wording of the last question to ever persist. This accounts for those for whom the headaches only persist sometimes.

I'm no expert, but if the pain has a very clear trigger - in this case standing up - then it's clear that something that happens when standing up causes the pain. It's like saying when I put my finger over a fire it hurts. I wouldn't want putting my finger over a fire to stop hurting - or I may not realize I am burning my finger off! The pain is sign of something actually going wrong, and I for one do not want to not feel it so that I am doing damage without knowing it!