posted
To keep this short: I have had constant struggles with low heart rate, blood pressure, dizziness, and light headedness. It is debilitating for me causing falls and a few fainting spells.
I had a tilt table test on Thursday and after administering the Isoprel and standing me I fainted within minutes.
I was hoping for a solution to this problem an instead they told me to wear compression stockings and to drink more water (other Drs tell me to drink LESS as I drink too much water already).
Has anyone received help after getting a positive tilt table test result?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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posted
John Hopkins did a study years ago with tilt table testing and cfs patients. As we know most of cfs is lyme anyway.
You might want to google that to learn more.
Posts: 805 | From Utopia | Registered: Feb 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Cortef, florinef, beta blockers are often prescribed
For POTs and NMH.
Google dysautonomia or Postural Orthostatic Tachycardia or
Neurally Mediated Hypotension.
There are some really good sites with a variety of treatment options.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I had a negative tilt table test but my cardiologist told me to wear stockings anyway. I never did get them, since I can't even get to a store anymore. But maybe they will help, I don't know. Anyone else try them with any relief?
posted
I have done numerous searches on dysautonomia but was hoping to hear personal experiences.
I actually don't have POTS as my heart rate never goes above 55. When they used meds to raise my heart rate above 100 I passed out. They dx'd me with "neurocardiogenic syncope".
Is anyone currently on cortef or florinef?
Thanks!
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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Please note that I am not a medical person, but I can share with you my family's experience.
My adolescent has POTS. POTS, NMH, and other dysautonomias are fairly common in tick-borne illnesses according to my LLMD. Here is a link that I like to send people to because it is straight forward to read: dysautonomia info
My kid is monitored by a pediatric cardiologist. I can't tell from your post, but if you are not seeing an actual cardiologist, you might want to consider getting one to treat/monitor you. Current treatment is midodrine (raises blood pressure)and florinef/high salt + high fluid diet (increases blood volume). I didn't realize it until I read this info that our bodies are basically a complex hydraulic pump system.
Monitoring involves EKG and echocardiogram in addition to the checking of blood pressures lying down and standing up. These checks happened every month until the treatment plan and symptoms stabilized at an acceptable level. Now, the visits are every 6 months and we monitor blood pressure at home.
One trick in stabilizing the POTS was to drink complex fluids, not water, in the high fluid diet. So soda, gaitor aid, milk, kefir, fruit juice, etc. Straight water, in large amounts, can be counter productive because the water can dilute the salt concentration in the body. The cardiologist was really key in helping us find the right balance of salt, fluids, drugs, to achieve control of the symptoms. Clearly, treating the babesia helped as well.
I hope this information is helpful and you feel better soon.
Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Lisa D,
I still think you may have heart block! You are still going to see a cardiologist, right? I hope they didn't cancel that appointment.
Ugh...how frustrating for you! I agree that administering more fluids may not help, esp if you already drink a lot, as that can be dangerous too!
Please note I am not a doctor and cannot give medical advice, but if you don't have the cardiologist appointment any longer, I would highly recommend that you seek another opinion. I'm sure they think because you don't appear to be in CHF, that you are 'fine'.
posted
Thank you to those who have replied with advice and experiences. I am going to see a cardiologist in two weeks.
How do they diagnose heart block?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I've never had a tilt table test, but would like to so I can know for sure if I have dysautonomia/POTS for sure or not. I am pretty sure I have it, but now since I'm on Toprol, I don't have as many of those days feeling like I did when I was not on it and very dizzy when standing, feeling faint, etc., etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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WildCondor
Unregistered
posted
usually, if you fail the TTT like that you are given beta blockers and Florinef right away. After I did my test, i got a Rx for Atenolol on the spot. See a good cardiologist and bring your results. You'd probably benefit from Atenolol, florinef and possibly midodrine. Increase your water intake and salt intake, avoid prolonged standing and heat.
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I had a pos. TTT 2 weeks ago. Since then, I was put on Metoprolol and it doesn't help my resting HR at all. They gave me POTS diagnosis.
The metoprolol has made me sick and I'm stopping it. It has given me terrible nausea, refulx, dizzyness, lightheadedness, and has even made my already bad anxiety worse. Also, it makes me week, tired, achy, and muscle cramps.
I hope I don't get rebound tachycardia. If I do, I probably won't notice it. I've been on 50mg 2 x day for last 2 weeks.
Even increasing my water intake and salt has done nothing.
Just need to kill off the Lyme and hope it also goes away.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
So sorry that many of you are having problems with this. Getting the right combination and treatment regimen for the meds/salt/fluid took us several months. The cardio still "tweaks" timing of the dosages as my kid's equilibrium is slowly changing as the tick illnesses are starting to recede with treatment.
I wish you all the best in dealing with annoyance of dysautonomia. - Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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WildCondor
Unregistered
posted
Metoprolol made me sick too, so I switched to Atenolol, which is better tolerated it seems.
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I had a positive tilt table test. My heart stopped while in full standing position strapped in.
They didn't think anything was wrong with me.. You know, how doctors tend to treat women.. Hyopchondriac.
After my test, they were really helpful and nice.
Not a test I intend to repeat. Don't recommend heart stopping...
I'm not on meds now because what they had me on either didn't work.. Or when they treid something else, it made me sicker....
It'd be so nice to take something that wouldn't have a lot of symptoms or be harmful, that actually helped.
a symptom of one of the heart meds was sudden death, rotfl. been there done that, don't wanna risk it again, Thanks!
I sm taking 3-500 mg of coq1 and hawthorn berries.
Posts: 59 | From U.S. | Registered: Oct 2007
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lymeparfait
Unregistered
posted
I agree with lymepool. My son and I have the same problem. Had tilt table test way before our lyme diagnosis and found this problem after major symptoms. He is a competative swimmer, and sometimes, he would pass out while doing flip turns. No sign of a problem before the turn! It would also happen when kneeling as an alter server at church.
We take electrolyte mix or "emergen C" with water. Water straight seems to deplete the balence in us with lyme. Some of us who have lyme affecting the vagus nerve have these low blood pressure problems that were mentioned by lymepool and CAPA. This took me 4 years to work out after seening the best pediatric specialists in NYC, Columbia U., and olympic team MD's etc.
Interesting that lyme was never brought up by them, and interesting that Columbia U. doesn't share their info between specialists...as we have now been to Columbia U. for lyme type tests/ treatments sent by our LLMD.
No one, except our good llmd's are connecting the dots.
Also, NOW< we have not been having any symptoms that we had before. We finally have also addressed the mal-absorption issue. Please work with someone who understands nutrition and how lyme patients do not absorb nutrients correctly. We supplement with liquid shakes, off and on, containing amino acids, electrrolytes, etc. Our own combo for endurance,and balance.
posted
Thank you for these great suggestions! I am waiting on an appointment with a cardiologist who is familiar with dysautonomia. I am not sure he is Lyme friendly but sometimes I have to take what I can get!
My LLMD is afraid that I have heart block and I am currently off of antibiotics as she is afraid that the die off will make the heart block more severe.
Does anyone have experience with treating Lyme while managing heart block?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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WildCondor
Unregistered
posted
Yes florinef is a steroid but it is not the same kind of steroid as cortisone. Florinef acts on the kidneys to help your blood volume remain higher, thus, increasing blood pressure. It is OK to take Florinef when you have Lyme, no question.
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posted
I naively thought doing the tilt table test was going to shed some great light on my condition. It just confirmed that I faint when I stand up which I already knew! Why can't doctors just believe you instead of sending you to an expensive test that causes a lot of stress (my heart stopped during the test)?
My doc prescribed ergonovine. I guess it is pretty old school and we had to search for a pharmacy to formulate it, but my blood pressure came right up with it!
Posts: 73 | From ID | Registered: Jul 2008
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posted
I am still not sure what my test results actually mean. I passed out after they gave me the Isoprel and stood me up. My heart felt like it was racing out of my chest but it was only 116 at its highest.
To me this seems to suggest that my system cannot handle a 'normal' heart rate. Am I misunderstanding?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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posted
I had a Tilt Test two days ago which confirmed NMH. They stopped it before I actually passed out. It was horrible. I was begging them to stop as I was blacking out.My treatement for now is to increase liquids and salt and to stop all caffeine. Dr wants to hold off on meds.
I believe this is directly caused by Lyme although the Cardiologists wont make that connection.
Posts: 29 | From New York | Registered: Apr 2008
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
My son has this.
I recommend an electroyte supplement called "Selectrolytes". It is pure sea salt and minerals that you add to your water or drink.
There are no sugars or additives, and it works to balance the fluids in the cells by also adding the needed magnesium and potasium. This is good for all chronically ill. By hydrating each cell, the cell then has the ability to take in the minerals needed to work properly. Water alone does not do this for this problem.
My son also has Gilbert's syndrome ( a biliurben inbalance) that flairs with dehydration of the cells,(during physical activity sometimes, and sometimes when just kneeling or slowing the blood supply posturally) and that's when his NMH flairs as well and the vagus nerve reacts.
Wonder how many with lyme also have some sort of dysautonomia or disregulation with the vagus nerve and dehydration.
I posted another thread asking those to respond who had Gilbert's syndrome. There is a link here.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Before I knew I had lyme I too almost fainted with the tilt table test. Nurses couldn't find my blood pressure. I remember I drank a lot of V8 which is high in salt and took salt tablets.It gradually went away. I wasn't diagnosed with lyme till 6 months later.
Posts: 82 | From east hampton ny | Registered: Jun 2006
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi CAPA, I was given a TTT in 2003 when I had the dianosis of CFS. (I think it may actually be Lyme, but not sure.) I was positive for Neurally Mediated Hypotension.
Anyway, they started me on Florinef. It didn't help. Then beta-blockers; they made me feel worse.
Recently I tried MIdodrine. It helped some for a few months. Gave me hope. And then, it started making my hypotension worse, plus terrible pressure in my head. So had to stop the med.
Right now, what helps is increasing sea salt. Taking licorice root. I take this as a tea. Don't take this if you have high blood pressure. Licorice root helps your body to hold salt and fluids, increases blood pressure, and it helps my energy level. And I wear compression hose. I use 15/20 and 20/30. Haven't been able to handle the 30/40. Too hard to put on.
But I can't wear pantyhose because it makes acid reflux worse. And the thigh high causes welts. The hose themselves cause an allergic reaction, so can't wear them everyday, and way too hot for the summer.
Even on the days that I can do all of these things, I still can't stand or sit upright very long. I am still disabled.
But, I am not giving up.
Good Luck.
P.S. One person on a message board discovered that they had Type II Diabetes. Was given a medication for it that also reduced inflamation. This helped her autonomic dysfunction symptoms.
Then she found out that she also had Diabetes Insipidus (sp?), which causes you to pee all the time (more so at night) and throws off your electrolytes. When she started taking Vasopressin (sp?), she got well and no more autonomic dysfunction. One more thing for us to consider.
And with Lyme, you pee a lot, so it does throw off the electrolytes.
Best wishes.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a group for dysautotonia (sp) on www.lymefriends.com. Feel free to come check it out.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
The reason for a TTT is to find out the mechanisms that are causing you to faint. Different people faint for different reasons.
I was prescribed atenolol right after the TTT. I couldn't take anything but a ridiculously sm. amt.due to side effects. So we added verapamil to help control the inappropriate sinus tachy. (The atenolol was enough to control the NCS.)
I am surprised your dr. didn't recommend taking salt supplements. My cardio did and from the reading I have done this is usually suggested. (I use sea salt.)
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry I didn't read all the responses so this may be covered already.
I have dysautonomia and tachycardia but I got my diagnosis from other testing while being hospitalized.
My guess is that they are trying the least invasive method first to control your condition. If that doesn't work they should treat further.
Did you get a diagnosis?
I'd try the recommendations and if they don't make a difference right away, and your doctor doesn't treat further, I'd find another doctor who knows what they are doing with your diagnosis.
I was put on heavy meds and jobst compression stockings initially. Both made things worse. When I took the stockings off my body went whacko and my blood pressure dropped even more. Jobst are VERY tight compared to OTC compression stockings. The blood volume expander that is typically given to keep blood pressure caused me to gain a huge amount of weight very quickly.
Hope you feel better soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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