Topic: What meds are you on for POTS/dysautonomia?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
What meds are you on for it that actually make a noticable difference?
I think this is a bigger problem for me than originally thought.
I was diagnosed with it by a dysautonomia expert. I have a lot of the symptoms that aren't even Lyme related, like the genetic background for it, hyper mobility (which is where you are bizarrely flexible, meaning too much collagen in the body, meaning blood vessels are too elastic), etc.
All I have taken for it is Midodrine, and that didn't seem to help a ton. Also too Pindolol at one point, and that helped a little.
The main things I'm looking for, is something so that my blood will pump up to my brain. I have the symptoms where I get VERY figety and uncomfortable standing still....so that is telling me my standing bp is not sufficient.
I do a lot of the adaptations like crossing my legs when standing, or when sitting, I sit on my legs. I do all these subconsciously, so it is making me realize how much I deal with this issue 24/7.
What have you all found to help?
I have a very high pulse, but don't have heart symptoms that bother me that I need relief from. I think overall, from the meds, I'm just looking for more "strength" and feeling like I can take a shower without getting weak. That sort of thing.
Thanks so much!!!! I will be seeing my dysautonomia specialist again soon, and I would like to bring some fresh ideas to the appointment.
Posts: 4590 | From Midwest | Registered: Jun 2008
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feelfit
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Member # 12770
posted
Hoosiers,
I really believe that most of us have dysautonomia to some degree. Part and parcel to the complexity of this whole process.
Honestly, for me, the only thing that had improved symptoms, for me, was when I was on Mepron/Zith. That being said, I have not been evaluated by a dysautonomia expert....
Did you see Dr. Grubb in Ohio? I know that they use the Midodrine there as well.
I have a shower bench now and sit on it while showering, it helps. I also sit while drying my hair, that helps too. Other than these simple measures, nothing else seems to do much.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, that is who I see.
He didn't change anything up in my last two appointments though, so I am asking myself if maybe I should try to see someone new who has more tricks up their sleeve.
Or maybe Dr. Grubb does have more tricks, but he just hasn't used them on me, and I need to be more insistent. I don't know.
Last few times I saw him I was doing a bit better, so maybe that is why nothign was changed. I'm worse now though, and wondering if there are better things out there than Midodrine.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My adolescent has POTS. It was several months of trying different combinations of drug dosage/diet to get a regimen that worked well. We still have to "tweak" things based on changes of activity level.
Here is a link that covers some of the treatment options. POTS Treatment Info
Salt and fluid intake turn out to be very critical. Best Wishes,
Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Did you have to wait 10 hrs for Dr. Grubb to come in for your appt Hoosiers51? OMG, that office was insane. lol. They said you can camp out all day, bring a paper bag lunch, etc. I'm hoping the guy is an absolute GENIOUS to put up with this stuff.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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beths
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Member # 18864
posted
I didn't treat with anything other than water and salt. Went away after 18 months of abx!
Posts: 1276 | From maryland | Registered: Jan 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hoosiers wrote: I have a lot of the symptoms that aren't even Lyme related, like the genetic background for it, hyper mobility (which is where you are bizarrely flexible, meaning too much collagen in the body, meaning blood vessels are too elastic), etc.
I'm not sure what you mean by genetic background for it. I know there is a genetic form of it which is usually associated with a Jewish population.
I'm not Jewish but every single person in my immediate family has it. I firmly believe it is related to infection for us.
I also have hypermobility. Some other family members have it too. It could be genetic but it could also be a consequence of the effect of borrelia on collagen. According to Buhner, borrelia lives in our collagen, liquifies it and uses it for food. Could it be that our body is responding by generating excess collagen? Just a thought.
I agree with feelfit. I think many of us have dysautonomia. It may be hard to detect because sometimes it is of the delayed type. That was my diagnosis initially. My blood pressure didn't drop until I"d been standing for 20 minutes. That eventually changed and now it drops much quicker, especially in the heat.
The following link has some interesting info - check out the info on allergies as a contributing factor (we know lyme causes severe allergies in some of us), also the info on treatments. One thing they mention is the use of IV fluids. I think one of the CFIDS doctors uses this sometimes. Maybe Cheney?? http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm
I've had dysautonomia for decades. It is what originally caused me to become disabled. I eventually could not stand up or even sit up for more than 15 minutes at a time without long lasting consequences.
I am on a drug similar to what you take - a vasoconstrictor - dexedrine. After long term use (20 years), it has caused mild pulmonary hypertension. BAD NEWS! It is very serious if it progresses.
I also take a beta blocker to keep my pulse in a more normal range. I'm looking for some other treatment in order to avoid progression of pulmonary hypertension.
Like feelfit, the only thing that has made a difference with my dysautonomia symptoms is mepron/zith. I could not even tolerate normal room temperatures prior to mepron/zith.
Didn't get rid of babs with approx 6 months of treatment. Now I'm on malarone. Currently, treatment seems to exacerbate the orthostatic hypotension and weakness. My systolic bp fell to 75 the other day in the doctors office.
I've had the weakness a lot more often since starting the malarone. After mepron, the weakness was rare.
There was a gap of about a year between mepron and now malarone so I'm positive of the effects of my initial treatment with mepron. Not scientific but the fact that treatment with malarone is now exacerbating my orthostatic symptoms seems to verify the connection.
I want to make a few comments about the link given by lymepool "POTS Treatment Info". It is easy to become deconditioned with this problem which only makes the dysautonomia worse so I do think it is important to be as active as possible however in the case of those of us who have severe dysautonomia due to infection, I do not believe "Physical activity may even hasten the day when symptoms go away on their own."
I was very physically fit when I became ill with these symptoms. Aerobics 3+ times a week and other sports. I had to stop because my pulse would go over 250. This is not safe.
That said, exercise does boost the immune system so I can see why it might be helpful.
Dr. B does say that lyme patients will not recover without excercise but I really think one has to be at a certain level of recovery before embarking on a careful exercise program - just my opinion though.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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