I saw my Primary Physician Thur. She understands me better than any of my specialists, including my neurologist. She said if my HR continues to be low, I may need to see a Cardiologist about getting a pacemaker. She cut my dose of Lyrica in half because she thought that might be contributing to this latest phase that I'm going thru' of almost daily syncopal spells.
She also mentioned that the stress I'm going thru at home-Worrying about my Mother's ill health and My Dad's Alzheimers disease could well be contributing to this latest trouble with the dysautomia. Does anyone else have increased problems with their dysautomia when they are under a lot of stress?
I thought that it was because I was going thru' menopause and due to the hormonal changes. I mentioned this to her and she said the two problems together would make it even worse.
You're diagnosed with POTS, right? And you also have diabetes? Have you been biopsied for peripheral neuropathy to see if that is a contributing factor in your dysautonomia? What autonomic testing has been done?
I'm so sorry to hear you're having such a rough time with the syncope. Is it a neurologist that manages your POTS treatment? What medications are you taking to try to manage the syncope?
I'm glad that you've found a supportive primary care doctor! That's so important!! I don't know what I would do without mine.
If you do see a cardiologist, be aware that generally speaking, pacemakers are contra-indicated in POTS. There are exceptions .... but overall, POTS patients tend to respond poorly to pacemakers. When I get better I can point you to some journal articles on that if you'd like. Just remind me when I get back.
Stress is definitely a trigger for increased symptoms for many dysautonomia patients, and hormonal changes also play a role for many patients as well. On the bright side, some women find that they have much milder dysautonomia after menopause! So maybe there's something to look forward to... you never know.
I have several types of neuropathy, Peripheral neuropathy, Motor Neuropathy (Right Purneal Nerve-causes right foot drop for which I wear an AFO brace on the Right Leg), and Autonomic Neuropathy.
I was Diagnosed with Autonomic Neuropathy approximately 4 years ago. Yes, I do have Type 2 Diabetes which was under very poor control for several years. I used insulin during that time, but my blood glucose stayed very high which is what they believe led to all the problems I have with neuropathy. It is under much better control now, and I only take pills, but the damage has been done.
I was just diagnosed with POTS about 2 years ago. I've had times when it is in good control and times like I'm going thru' now when I have frequent syncopal episodes (they aren't as bad as when I wrote the first Comment here though)
I do have a neurologist who specializes in autonomic dysfunction, but my personal opinion of him is that he excells at diagnosing autonomic dysfunction, but isn't all that great at follow-up care or educating his patients. My primary care doctor is much better at explaining things and taking time with her patients.
I've had 2 tilt-table tests:The first one in the hospital, where they tested my HR and b/p periodically as they tilted the table, and the second in his office was with some kind of new device that constantly reads your b/p and HR, but it's not invasive. After the test in his office he told me that I not only had general Autonomic Neuropathy, but also Postural Tacchycardia Syndrome.
I don't remember any specific tests/biopsies that show I have peripheral neuropathy, I just have the severe symptoms of it, burning, the feeling like "pins and needles", etc in all my extremities, sometimes all the way up my leg to the back of the knee. I've had this for nearly 10 years now.
You spoke something to the effect of "When you get better" you would show me some articles regarding the ineffectiveness of pacemakers for POTS patients. I'm sorry you're not feeling well. This comment will be here when you get back. I tried to go step by step and answer all your questions. This is the first group I've belonged to with other people effected by dysautonomia who are educated about their condition, so I feel quite dumb in the midst of all of you, but I desperately need to learn if there is anything more I can do to help myself!
I only take one medication right now specifically for the autonomic problem: Midodrine 7.5mg at 7am, 12 noon, and 5pm. (I used to take Metoprolol ER 25mg, but it began to make my heart rate get as low as the low 40's just recently, and during a syncopal spell the nurse at the Adult Day Care I attend could not find a pulse for several seconds)
My doctor mentioned that IF my HR continued to get low even after being taken off the Metoprolol that I might need a pacemaker. It's been in the high 40's, but that as low as we know about.
However I have multiple illnesses for which I take a host of medications. I'll be happy to list them all if you wish as I'm always glad for any input. The doctors' input so far is that my pain medication and the Lyrica could complicate things and my Lyrica was recently reduced from 150 BID to 75 BID. I can't decrease my pain medication right now as I feel I'm taking the minimum amount that I can function well on. (I take Methadone 5mg TID)
Besides Autonomic Dysfunction I also have the following problems:
Type 2 Diabetes
Motor Neuropathy with R. Foot Drop
Gastroparesis (actually this is part of the autonomic dysfunction, but I have it listed separately on my list of problems because most doctors don't know that right off)
Urinary Incontinence (this is also related to the Autonomic dysfunction)
Recurrent DVT's in Right Upper Extremity
Thank you for the suggested reading. I went thru' a lot of that the first day I came to this site, but I need to go visit that area of the site again and read some more as it doesn't stay with me. I have some cognitive problems too. They say it is "Fibro Fog". Whatever it is, it is most inconvenient indeed! That's how I picked out my nickname, "Groggyfroggy"
Have you tried any other medications to control your symptoms? I'm not certain they wouldn't interact with any of your current medications, or other medical conditions, but there are other options you may want to discuss with your doctor. For example; Florinef, Pyridostigmine, Ritalin, Theophylline, etc.
I'm just on the midodrine which does the same thing as florinef I'm not familiar with those other meds, so thanks for the link. I will look them up as soon as I finish this message.
As I mentioned I was on the metoprol to keep my heartrate controlled, but it made it too low, even with the midodrine, in spite of the fact that it was a very small dose, and extended release.
The increase in the midodrine, and increasing the amount I drink has helped a lot, just since I've started visiting this site. I also have increased my salt intake. I had previously been drinking sodas, and I only drink those with supper now. I drink water and G2, or whatever other sugarfree electrolyte drink is on sale.
G2 is NOT sugarfree, it is reduced sugar. I got mixed up as some of the drinks I've gotten are sugarfree, but G2 is not one of them. I believe one 8oz serving has 50calories. A link to nutrition information is posted on another comment under the discussion. WATER? GATORADE? or words to that effect.
I appologize. That's why I chose the name groggyfroggy as I have fibromyalgia and "fibro fog" and often have cognitive issues and make a lot of mistakes like that. (this probably won't be the last, unfortunately)
Actually, the drugs Midodrine and Florinef work quite differently. Midodrine is a vasoconstrictor. That is, it attempts to raise blood pressure by constricting blood vessels. Florinef helps the body to retain salt, and water.
Sorry it is taking me so long to find you the information on pacing in dysautonomia/POTS. Some of what I have is in books, and of course I can't just quote entire chunks of books I own because that would be plagiarism. I'm having trouble finding a couple of journal articles on the subject that I *know* I have somewhere, but in the meantime, this is a start:
Click on "Click to look inside" on the picture of the book cover. Where it says "Search inside this book" type "Grubb" and click "Go." You should get 17 results. The pages are not all continuous, so you cannot read the chapter in its entirety (after all, they do want you to buy the book!) but there's enough there to really get the gist of it. The available pages are listed on the left side; the chapter starts on page 471 and gets into pacemakers on page 482 (page 481 is not available in the preview). It is most clear if you read the entire chapter, not just the part on pacemakers, unless you are already familiar with Dr. Grubb's books on syncope in which case it may be redundant.
I think the take-home message is that pacemakers have been proven most effective in cases where the problem is purely bradycardia/asystole. However, research has not borne out the efficacy of pacing in dysautonomia, particularly because of the role of blood pressure in syncope in dysautonomia. Also, as in POTS, there is the issue of tachycardia. What is said in this chapter seems to correlate with what I remember from the journal articles, but I'm still working on trying to find those for you. I'll let you know when I find them. Sorry it's taking so long.
Considering you have diabetic neuropathy, has your neurologist considered sending you to a facility that is capable of doing a more comprehensive autonomic workup? It sounds as though the testing you have had is pretty minimal. You aren't terribly far from Vanderbilt, are you? Perhaps autonomic testing could help indicate which medications would be most helpful to you. They also have cardiologists that are experts in autonomic, so they would probably be the best ones to ask about the advisability of a pacemaker vs. other treatment options. It might be something to consider now or for the future, especially if it's not too far away from where you live.
How did your visit with your primary care doc go? I hope you're doing well. My apologies again that it's taking me so long to find those articles. Bear with me.
From the American College of Cardiology & the American Heart Association:
( http://circ.ahajournals.org/cgi/content/full/117/21/e350 )
"Recommendations for Permanent Pacing in Hypersensitive Carotid Sinus Syndrome and Neurocardiogenic Syncope
1. Permanent pacing is indicated for recurrent syncope caused by spontaneously occurring carotid sinus stimulation and carotid sinus pressure that induces ventricular asystole of more than 3 seconds. (Level of Evidence: C)142,152
1. Permanent pacing is reasonable for syncope without clear, provocative events and with a hypersensitive cardioinhibitory response of 3 seconds or longer. (Level of Evidence: C)142
1. Permanent pacing may be considered for significantly symptomatic neurocardiogenic syncope associated with bradycardia documented spontaneously or at the time of tilt-table testing. (Level of Evidence: B)147,148,150,153
1. Permanent pacing is not indicated for a hypersensitive cardioinhibitory response to carotid sinus stimulation without symptoms or with vague symptoms. (Level of Evidence: C)
2. Permanent pacing is not indicated for situational vasovagal syncope in which avoidance behavior is effective and preferred. (Level of Evidence: C)"
One of the studies that Dr. Grubb references:
Another article from the UK mentions the problem of possible placebo effect in the data from at least one pacemaker study:
One further note: if you do not already get much warning before your syncope, which is to say, enough time to react and possibly lie down and avert the episode, that may be important information. Some patients in research studies did find that even if the pacemaker did not stop them from having syncope entirely, it lengthened the "prodrome" or period of symptoms leading up to syncope, such that they had ample time to react and lie down so that they wouldn't actually pass out. This might be something important to take into consideration as well if it could significantly improve your safety or quality of life.
Thank you for all the work you have done to help me with the question on whether a pacemaker is indicated in POTS or not. My doctor hasn't mentioned it again.
I didn't get to see her Thursday as the wheelchair van didn't show up to get me from the Adult Day Care I attend. I was very angry (mostly at myself) because I had the confirmation papers at home, but not with me at the daycare to prove I had indeed made the reservation 2 weeks prior. They would not come and get me even though it was their mistake! I'll have to re-schedule now.
In regards to Midodrine and Florinef; I knew that Midodrine and Florinef didn't work exactly the same way, but the end effect is to raise the blood pressure. The reason I used the words I did was because a doctor on call for mine once asked me if I was taking florinef and I said, "No, I take midodrine", and he said, "Oh, same thing". Those were his exact words. I had passed out at the clinic when I was coming in for bloodwork and it was right after I had been released from the ER. He was debating whether to admit me to the hospital or let me go home. It was around the time I joined this group. He ended up sending me home as my vitals returned to normal after the syncopal spell.
I'll be more careful what I say in the future. I'm still working on becoming more informed about my disease and it's associated medications, etc.
PS I had wanted to raise the question with my doctor about going to Vanderbuilt when I saw her. I understand there is a long waiting list and the sooner I get on the list the better, in my opinion. Vanderbuilt in about 60 miles away.
Please don't feel pressured to find more information for me about pacemakers and POTS, when you are not feeling well yourself. I've read enough already that I'm not going to jump into getting a pacemaker. I will not be getting one unless it is determined that I absolutely do need one. You have already helped me to be much more informed on the subject.
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