# Tilt Test Results



## M&M (Jan 20, 2002)

They had another doctor look at my test results since mine is out of town. My diagnosis is officially "Neuro-Cardiogenic Syncope" or "Neurally Mediated Syncope". The nurse said that basically means my blood pressure and pulse don't work together right. They are calling me in a prescription of Paxil, which I will take 1 20mg tablet a day. Hopefully it will work! I have a follow up appointment with the neurologist June 25 to see if the medicine is working, and how I'm getting along. Again, thanks for all the interest and support.


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## DonnaDB (Jan 13, 2001)

Not trying to be rude, but what does Paxil have to do with BP and pulse?? I thought it was an antidepressant.


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## M&M (Jan 20, 2002)

Thank you Donna! It ain't rude, that's the same thing I'm saying! I am spittin' mad...I'm researching it, I called the pharmacist too. I am not getting it filled until I talk to the doctor about it tomorrow. My doctor is out of town for the week, so some other doctor called in the prescription. I'm investigating the situation, I'm not real eager to stuff myself full of anti-depressants because I almost pass out sometimes.


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## weener (Aug 15, 2000)

Good idea to check things out MrsM especially since your regular doc isn't there. I'm also wondering how the paxil will work. Maybe the pharmacist can give you some answers. Good luck with everything and let us know how you are doing.


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## M&M (Jan 20, 2002)

Thanks Weener. lol Funny thing is I did call the pharmacist, and he said he had no idea why they would prescribe me Paxil for low blood pressure. He said, well maybe if it is related to a panic or anxiety disorder? But it isn't. I really appreciate the replies, I'm in mini-crisis mode right now, but coming out of it. Thanks again, I will let you know what happens.~Mrs. Mason ((((HUGS))))


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## Rocki (Aug 27, 2001)

Mrs. Mason, this is what I think of that doctor














Sorry that the www.ndrf.org message board is down right now. I have the same thing (NCS)and Paxil isn't rx'd for it that I know of. First of all, is the doc an autonomic disorders specialist (either cardiologist or neurologist specializing in ANS)? Did he mention increasing your salt intake, prescribing Florinef or Midodrine? Also, Gatorade helps some. There are so many treatments but they need to be tailored to you specifically. I take Inderal (Propranolol)also. I'm betting he prescribed it for the serotonin. I take Celexa (an anti-depressant)also. Some prescribe Effexor (Venlafaxin) but I can't take that without major, life-threatening reaction. In fact, those of us with this problem have trouble taking a lot of drugs. The rest of the site should be available at www.ndrf.org though so you can check it for treatments, etc. Let us know how you feel and what happens please. No sense in fainting and feeling faint! PS I love the little graemlin you always sign off with!Gayle


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## M&M (Jan 20, 2002)

Thanks Gayle.







Ok guys, here's the dirt:This is an off-label usage for Paxil. The doctor prescribed it for my NMH due to the fact that I also have IBS, CFS, and Fibromyalgia Syndrome. He feels that it will benefit me in all arenas, the serotonin levels helping with my CFS and Fibro pain and fatigue while also helping my brain regulate my bp and pulse. It is much the same principle for why doctors sometimes prescribe SSRI's for severe cases of IBS in non-depressed patients. Somehow Paxil affects the way nerves send and receive messages between central nervous system, brain, and organ processes (like the gut in IBS, and the heart in NMH, and the muscles in CFS/Fibro). Apparently, the physical benefits reaped by taking SSRI's are even greater in patients who do not suffer from depression (such as myself). My dad (a research scientist at a pharmacuetical company) has been researching it at work all morning, and was able to give me a lot of information, and suggested if I am uncomfortable with the 20 mg dosage suggested by the doctor, that I simply cut the pills in half and take 10 mg. So, while I am not in any state to make a major life decision right now (I'm fairly ill) I am weighing the pros and cons. I am also weighing the fact that the fainting spells only happens on a daily basis the week surrounding my period, and the fact that I am learning my physical limitations, and was recently able to reduce my physical exertion level significantly due to quitting a job I had. All of this is making me question whether or not I can control my physical symptoms (fainting) simply by restricting my exertion levels, or if I should proceed with drug therapy. At least now I know what I'm dealing with, and why Paxil was prescribed for me. The doctor is just trying to help ALL my problems with 1 drug. (Killing 4 or 5 birds with 1 stone, if you will) Thank you all for your support, and caring words. I will let you know what I decide, and how it works out for me! ~Mrs. Mason  Sorry this was so long and rambling


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## Mio (Dec 19, 1999)

Hi MrsM,some years ago when I had a depression I was rescribed Paxil. It worked very well for me, not that much side effects. One thing that you should know (Iï¿½m sure you already know this) is that you canï¿½t just stop taking them. It took me 6 months (ate more than 20 mg though) before I finally could take my last pill. I know that many doctors donï¿½t tell their patients that you just canï¿½t stop taking them because you can get a lot of side effects then.I hope you will get better soon and this works for you!/Mio


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## Susan Purry (Nov 6, 2001)

MrsMason, have you started taking the Paxil? How are you doing on it re: the blood pressure? I was initially baffled that you were prescribed an antidepressant for NMH, but then I thought about it... and remembered that one of the side-effects of the antidepressant I take (Remeron/mirtazapine, a tetracyclic) is postural hypotension. I HAVE to get off this medication!! So, I can see why an antidepressant may make the BP symptoms better as well as worse. Do you know what the mechanism of Paxil effecting BP is? Hope you're doing well,


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## M&M (Jan 20, 2002)

Susan,From the research I did, I found out that serotonin controls a LOT of body functions. Blood pressure and heartrate being one of them. (It also controls itchiness and pain) So I think the doctor felt that the Paxil would help regulate serotonin (It's an SSRI - Selective Serotonin Reuptake Inhibitor) and that would in turn help regulate my blood pressure. Unfortunately it is not helping me at all. I'm not all that unhappy because it is a very expensive drug to be on. I have a recheck Tuesday, and will tell her that the Paxil is not helping the NMH at all. It was miserable the first week I was on it. I was super jittery, felt like my body was shivering violently, and I had explosive and uncontrollable D. I still feel like it has made my normal tremor more pronounced. Anyhow, on Tuesday hopefully she'll have another option for me. On the good side, I have learned how to listen to my body a lot better, and although I do not enjoy spending most of my time in bed, or on the couch, I am very glad to not be passing out everyday! It is grand when you're able to cut back on your activity level and see good affects on your health! Thanks for checking on me Susan, I'm sorry I missed chat today - I lost track of time and ended up forgetting!







Next time I guess!~Mrs. Mason


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## Paige (Apr 4, 2002)

Mrs.Mason,Have you talked to your doctor about the blood pressure medications?Paige


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## M&M (Jan 20, 2002)

Hi Paige!I went back to the nuerologist for my recheck and told her the Paxil wasn't helping me. So, she is sending me to the cardiologist. She said if the Paxil isn't working, I obviously need a different drug, and she said the cardiologist would know better what drugs will affect my pulse and blood pressure. My appointment is the 23rd of this month. I will post an update to let you all know what happens. Thanks for thinking of me!  ~Mrs. Mason


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## Susan Purry (Nov 6, 2001)

MrsMason, I'm sure you know all of this, but just incase you don't... Ask your doctor about salt loading therapy (sodium) and the steroid Fludrocortisone, which are standard treatments for NMH. Recent studies have shown the two need to be combined to get results with NMH in people with CFS. Here are some links for you: http://www.med.jhu.edu/peds/cfs.html


> quote:Neurally mediated hypotension is most often treated with a combination of increased salt and water intake in conjunction with drugs that regulate blood pressure. Some drugs work by allowing the kidneys to retain sodium and others block the body's response to adrenaline, which can kick-start the blood pressure abnormality. In addition, it is important to review your current medications with your doctor to ensure that these medications do not include drugs or vitamins that have the potential to make neurally mediated hypotension worse. We want to emphasize, however, that the treatments require persistence, commitment and the willingness to try several possible drugs and combinations over an extended period of time....Among the drugs that have been found to help improve tilt table responses in patients with NMH are fludrocortisone (Florinef), beta-blockers (e.g., atenolol), disopyramide (Norpace), fluoxetine (Prozac), sertraline (Zoloft), ephedrine, pseudoephedrine, theophylline, methylphenidate (Ritalin), and midodrine. Your treating physician should work with you to determine the best possible combination for your personal situation. In general, however, the first step in treating this problem is to increase fluid intake. We cannot stress this enough. Our patients who have discovered the importance of drinking fluids regularly throughout the day seem to do better than those who don't take this task seriously. For those who have been on a low salt intake we recommend an increase in the amount of salt they add to their food.


 http://www.ndrf.org/ANS%20Research%20Abstracts.htm http://chronicfatigue.about.com/library/weekly/aa010901a.htm


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## M&M (Jan 20, 2002)

Thanks Susan! The neurologist told me to up my salt intake while I'm waiting for my cardiologist appointment. You know what's interesting though? I haven't had a _really_ bad fainting spell since I've started restricting my activity level!







Which is very good. I've had some minor ones, but not as bad as before.


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## Susan Purry (Nov 6, 2001)

MrsMason, how did you get on with the cardiologist today? Any progress?


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## M&M (Jan 20, 2002)

Wow Susan! I feel loved  Thanks for asking







The doctor was _fabulous_!!!!! He felt the Paxil was a silly choice of prescriptions, and so he told me to take half a pill for a week and get off of it. Then he gave me a prescription for a Beta Blocker called Toprol-XL. He even gave me enough samples to last me over a month!! I go back in a month to talk to him about it, and to see how I'm doing. They did an EKG and it looked normal. He said there is a big connection between CFS and NMH (duh!) and that my Tilt Test results predict I should respond well to the Beta Blocker. I should find out within the week if it's going to work for me







He also gave me some training exercises. He wants me to stand against a wall with my heels and head straight against the wall for 10 minutes a day for a week. Then, the next week for 15 minutes, and 20 minutes the next week, etc. He said this helps train your body to react better to the pull of gravity on your blood. He also said that during the summer I should drink more than my normal 2 liters of water a day, because that will help my fluid volume level. Also that I should be sure to not restrict my sodium, as this will help me retain water. Pretty much the basics - he was a super doctor!


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## Susan Purry (Nov 6, 2001)

Hi MrsMason. SO glad your appointment went well and you have a good doctor.OMG







Don't you faint if you stand up for ten minutes?







How's that going to work?! In a similar vein (LOL get it? veinous pressure?!)... did you know that elevating the head of the bed can help with NMH? Got to be done with blocks though or a wedge, rather than more pillows. I must get round to trying that one day. How are you getting on with the betablockers?


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