Couple Of Questions For Those Of You More Experienced

[pickledfairy]

Hello All,

I just returned home from a 3 day admission at BMC to try to get my POTS and neuropathy symptoms under better control. After a "fluid challenge" (where they literally sqeezed in two liters of fluids over a half hour) my orthostatic symptoms responded a bit (HR still increased to over 120, but did not get to 170 as before) and this is with drinking 56+ oz of water and gatorade that day. My autonomic specialist said that I have a type of POTS that responds better to IV fluids than oral due to how much my vessels leak. Does anyone else have this, or experience this? Unfortuately, he is reluctant to start IV fluids due to the risk of infection from the line and is trying another drug first. I am also pretty tachy at times while resting (90-100)

Which leads me to my next question. I was just started on Yohimbine (which he said could make my hypertension worse but he is hoping it will affect the extreme tachycardia) which the pharmacy insert said was used for erectile dysfunction....yes I can hear the jokes now !! Has anyone taken this drug and if so what affect did it have on you? I tried to do a search for it on the forum, but only got a couple of articles mentioning it had been used in the past.

Thanks for any comments, I appreciate it.

[Jacquie802]

what docs do you see? also, how is this med supposed to help POTS?

Jacquie

[pickledfairy]

Hi Jacque,

I see Dr. Novak at BMC. As for how the med is supposed to help the POTS...I am still a bit confused. He said that it works in conjunction with the Mestinon and that it should help the blood vessels to I think he said dialate. He hopes that it will help with the leaking of my vessels. Since I have autonomic neuropathy, hypovolemia and POTS, perhaps it has more to do with the neuropathy or the hypovolemia than the POTS symptoms. I am to take my orthostatic vitals twice a day and then call him on Friday and he said he would then decide if I should stay on it. I must admit that when I have looked up the med, it seems to have side effect that are counterintuitive to managing my symptoms (i.e. tachycardia, high blood pressure, dizziness). So, to be totally honest I am going to have to quizz him further to truly understand.

[scarfgirl]

LOL. Well, if you think about it, erectile dysfunction often involves not getting enough blood flow to certain "areas" when needed . I suppose the same principle could be applied to POTS people somehow. It's no stranger than some of the meds we take. And you said dilate, but did you mean contract? Offhand that makes more sense to me but I could be wrong.

Good luck with this experiment. Strange as it may be I really hope it works for you.

[Rachel]

PickledFairy,

Interesting...I'm not quite sure what to say!

I hadn't heard of Yohimbine being used for dysautonomia. But, maybe it helps somehow. I did some research online. I don't see how it could help POTS or hypovolemia, though, since Yohimbine does indeed dialate blood vessles. I don't know enough about neuropathy/your type of neuropathy, so I don't know what the drugs effect would be on that.

Yohimbine does seem to be somewhat of a conroversial drug. I would definitely do some research online and quiz your doctor for more information.

Good luck! Let us know how Yohimbine works for you.

Rachel

[pickledfairy]

Thanks for all of the kind words. Believe me I will be quizzing him on Friday when I talk to him! No changes in HR or dizziness so far...but I wi give it until Friday.

[DancingLight]

Many of us do well with IV fluids on this board...I'm trying to think what would be best to search for, as it has been discussed a LOT before and it might help you out...

Dr. Novak is obviously on the ball with you and 'gets' that you respond to IV fluids better than oral ones. I had a PICC line for a while to do fluids at home, but it didn't go so hot. But, I have a standing order, especially at bad times to go to the Medical Treatment Unit at the hospital and get two liters of warm fluids over two hours. I only need to do this when my ANS is really crazy, but some people do better with them regularly. It helps me avoid a trip to the ER for fluids having this system worked out....maybe you could find something like this to do instead of getting a line inserted and just go every 2 days or something and see how it goes?

My understanding is that we don't really know WHY IV fluids can help POTS patients so much, but they do help a lot of us. I'm hit or miss with them....have to be really 'crashed' for them to help.

Maybe try just doing a search for topic titiles with "IV Fluids" or "IVS" or "Fluids" and see if you get hits just in 'topics' not individual posts (that would be a LOT to go through). I think you will get some good 'hits' and info, but if you don't...let us know.

As for the Yohibmine I have heard of that being used, and think it is mentioned in the NDRF handbook and Dr. Grubb's book, but don't have any experience with it.

Hope this helps a teeny bit...

Emily

[Jacquie802]

I see Novak this Friday! I'll let you know how I make out...

Jacquie

[Sunfish]

i don't want to negate the fact that IV fluids can help people immensely...i know they used to do wonders for me when i got them occassionally in the midst of "crashes", acute illnesses, etc. like others have mentioned i have had standing outpatient orders for them over the years. they tested my reaction to oral vs. IV fluids when i was a research patient at vanderbilt a few years back as well. and i often thought that i'd be SO much better if i could get them consistently, i.e. daily. some have done this and had great success with it. i actually am entirely dependent now on IV nutrition & fluids due to a non-functioning GI-tract but am no longer so noticably helped by the fluids (though still have higher IV intake needs than a "normal" person & get in big trouble if i miss any or don't have extra when acutely ill, etc.).

BUT...and this is a big but. along the lines of your doctor's concern with infection, i would be VERY tentative about getting an indwelling/central IV line without having exhausted ALL other options. i know when i used to ask dr. grubb about doing so i was a bit frustrated that he wasn't more open to it (b/c of his concern of infection) since it seemed to help me so much. but i've now "been there, done that" and line infections, which easily lead to sepsis are nothing to mess around with. i've had a central line (or rather four of them now) for about 9 months and have had to be hospitalized twice due to complications. once for a localized infection & blood clots (related to the line). and just earlier this month due to life-threatening sepsis that brought on a 107 fever. i'll spare you the details but it was/is scary stuff with lasting ramifications when the infection/clots themselves clear. and statistically i haven't had as many infections as many with long-term central lines.

i'm not trying to minimize that some people have been helped by daily infusions but just wanted to let you know that the risk & seriousness of infections is really real. i didn't take it as seriously when dr. grubb used to say it to me as i do now that i've been there.

i really hope that you find treatments that help you sooner rather than later. and that maybe you can figure out a plan for intermittent (peripheral) saline IVs as needed. even that was a great help to me for years...helping me stay in school, working, etc.

melissa

[pickledfairy]

BUT...and this is a big but. along the lines of your doctor's concern with infection, i would be VERY tentative about getting an indwelling/central IV line without having exhausted ALL other options.

Thank-you so much for your replies, Dancing Light and SunFish. In regards to IV fluids, believe me I am very happy to try any and all medications...no matter what they were originally used for ...before looking into the options of IV fluids. Having worked in pediatric oncology before getting sick, I have seen the horrors that oportunistic line infections can have on the body and have no desire to deal with that unless I have to! I am glad that you are feeling better SunFish and I truly appreciate your hard fought wisdom and honestly on this topic, it means a lot. Thank-you.

Sheridan

[DancingLight]

i agree 100% with sunfish (i may not have been clear enough) about not getting a line unless absolutely necessary. i did and it was a disaster and sunfish has had worse disasters. i just preferred to go and get stuck each time...even if it was several times a week.

em

[SunsetParadise49]

Good luck on Friday !!!

Let us know how it goes!

[lavender]

I've never used Yohimbine, but I have been given viagra, levitra and cialis. They are all used mainly for erectile dysfunction. I was trying them for my vascular problems in my hands and feet. It sounds like they are similar to yohimbine. They all made me feel very gross. I am curious why a doctor would give you this type of vasodialator knowing you have POTS. How are you handling it?

Anyway, just thought I'd let you know I know how UNFUN it is to go pick up an Rx for an ED med, being a female!!! Luckely I know my pharmacist pretty well now, and he knows some about my case and that my doctor is trying out different things. Still it was embarrassing. I was glad none of the meds worked for me and I didn't have to stay on them!

[BuddyLeesWife]

I knew I had read about this before. This iexcerpt s from the Vanderbilt University Pharmacology of the Autonomic Nervous System http://www.mc.vanderbilt.edu/gcrc/ad_cente...tonomicsPDF.pdf

It is under the heading IV. Norepinephrine, Epinephrine, and Dopamine which starts on page 11. The article is very detailed and I find it difficult to read BUT it does discuss the various off-label use of medications that are frequently prescribed for different dysautonomias.

E. Alpha2-Antagonists

While phentolamine and phenoxybenzamine block a2-receptors, their major clinical

action is to block a1-receptors. The only widely available, relatively specific a2-

antagonist is yohimbine. By blocking a2-adrenoreceptors in the medulla, it increases

sympathetic outflow. By blocking presynaptic a2-adrenoreceptors in the periphery, it

enhances norepinephrine release. Yohimbine has long been reputed to be an

aphrodisiac, for which purpose the plant from which it is derived it has been sold

throughout the world. Studies during the last several years seem to confirm that a2-

agonists reduce and a2-antagonists increase copulatory behavior in rats.

[pickledfairy]

Yohimbine has long been reputed to be an aphrodisiac, for which purpose the plant from which it is derived it has been sold throughout the world. Studies during the last several years seem to confirm that a2-

agonists reduce and a2-antagonists increase copulatory behavior in rats.

Well, although it is not affecting my HR yet, perhaps there will be other benefits. ...too bad I'm single! Thanks for the link I am going to go try to wade through and reread it.