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Date of last update: 10/20/2017.

Forum Name: Hypertension

Question: Rapidly fluctuating blood pressure

 psyclops615 - Wed Mar 28, 2007 6:57 pm

I am writing on behalf of my sister, who was once again hospitalized for severely high BP, which fluctuates rapidly. She is a 50 WF with a positive family hx for essential hypertension which is well and easily controlled in both parents with common rx. In a matter of minutes her BP can go from normal to stroke levels (e.g. 220+/120+) and then back again. An example, she said yesterday she woke up, her BP was low at 95/50. An hour later her BP was 215/130. Thirty minutes after that it was 160/100. Ten minutes later that it was a normal 130/80.

The sharp rise in BP is accompanied by rapid heart rate, crushing sensation in her chest, and head aches. This has been going on for at least a decade, but frequency was rare (a few times a month). In the past few months, though, frequency has been increasing to multiple times per day, and she has been hospitalized numerous times by her internist or cardiologist. They say it is NOT an MI. They keep treating her with the same common BP meds (e.g. diruetics) but it does no good and until today, the keep running the same tests with negative results. Today they did an angiogram (no significant problem found) and also did something to examine her kidneys because the thought she was at risk of kidney failure (no problems found).

Maybe 8 years ago she was dx with Wolff-Parkinson syndrome, with similar but infrequent symptomology and they did something to zap a section of her heart. Symptoms disappeared for maybe six months, then have been gradually returning in frequency and severity until the frequent episodes began within the past few months.

As her brother, my concern is they keep running the same tests, trying various meds to treat essential hypertension, but nothing has done any good, and she's getting worse. They keep her in the hospital for a few days, and then discharge her with no answers or no game plan for what to try next that would be different. I was always taught "insanity" is continuing to try the same thing over and over again, expecting different results.

Any ideas what might be going on here? After researching this issue, so far the only answers I have found that seem to match her sx are: mixing prozac with MAOIs (she doesn't take antidepressants), chronic marijuana usage (I'm 99% positive she doesn't), or baroreflex failure. Or maybe its related to her Wolff-Parkinson's, but her doctors know that and have ignored it thus far.
 John Kenyon, CNA - Thu Mar 29, 2007 12:41 am

User avatar Hello psyclops615 - When your sister had the WPW accessory bypass tract in her heart ablated you say she had been having similar symptoms but they improved briefly after the ablation. I don't know of any reason the two would be related in any way, but I do find that interesting. I'm going to throw something out here, even though I suspect it's already been covered in the course of all the testing she's undergone, and that is pheochromocytoma. Stop me if you've heard this before. It is a condition marked by small adrenal tumors, more often then not benign, and most often (but not always) located on the kidney in the native adrenal glands. Sometimes they are not there, though, and can actually occur almost anywhere inside the thoracis cavity. They can be very small and difficult to spot at times. They are composed of adrenal tissue and so secrete adrenaline rather randomly. Pheochromocytoma often features sudden spikes in blood pressure. The fact that her BP can also be quite low at times would sound more like baroreflex failure or perhaps some variation on dysautonomia, a condition in which the autonomic nervous system does things that are inappropriate (such as raising or lowering BP when an opposite action or none at all would be the correct response).

Again, while I know of no reason why having an RF ablation to correct WPW syndrome should cause the symptoms to abate for a while, I do find this fact interesting and perhaps worth further exploration. Neurological and endocrinological workups, if not already done, would seem likely directions from here.

As I was reading your post, the definition of insanity you made reference to had already occurred to me as well. It would certainly seem time to branch out, even into areas not normally explored. The family Hx of hypertension may be acting as a red herring.

Your sister is fortunate to have you as an advocate. Keep prodding, and please do stay in touch.
 psyclops615 - Thu Mar 29, 2007 5:33 pm

John, thank you for a very helpful response. I had not heard of pheochromocytoma until today, but someone else was helping me research this issue today and came across that, so you're the second person today to mention it. I read what your web site had to say, and it is clearly a possibility which we need to mention for her doctors to consider. I saw where a test for pheochromocytoma is to administer clonidine, which interestingly is also what I read as a treatment for baroreflex failure and what I used many years ago (in the form of a catapres patch) to stop smoking. Vanderbilt U was doing a research study on that, I mentioned it to a doctor friend, and he gave me a couple of patches...worked for me, but I guess the research never panned out or was surpassed by nicotine replacement therapies.

I have mentioned both possibilities to my sister to discuss with her doctor. On an encouraging note, I found a local clinic at Vanderbilt that specializes in the treatment of ANS disorders like baroreflex failure and got their phone number for my sister to call.

On the Wolff-Parkinson-White that she was dx many years ago, I checked with my sister and had the symptoms a bit wrong. She was having mild BP spikes then, but the primary symptom was irregular heart beat and rate. I recall now that she went around wearing a Holter monitor off and on for months.
 John Kenyon, CNA - Thu Mar 29, 2007 8:56 pm

User avatar Hi again - You're very welcome! Isn't it strange that pheochromocytoma came up twice in one day and had never been mentioned before? Maybe that's a good sign. There is the clonidine test and also there is a 24 hour urine test which is often a preliminary screen. It i(clonidine) s a treatment for baroreceptor reflex failure as well, and to make that a trifecta, that's pretty interesting about your having been part of a smoking cessation study involving the same drug! Then to top off all that you found an ANS clinic at Vanderbilt. There are so many coincidences! It does all sound very promising, though.

As for the WPW thing, I just figured "You never know," but in a way I'm relieved because I kept trying to figure out how that could have worked. :)

Thanks for updating us and please do stay in touch..
 psyclops615 - Fri Mar 30, 2007 5:31 am

Thanks, John. Once I know what is going to happen, I'll post back and let you know.
 psyclops615 - Fri Apr 06, 2007 11:47 am


Well, my sister was in her local hospital for several days, then transferred to Vanderbilt for two days. They ran a bunch of tests, including both hospitals doing a 24 hour urine to test for pheochromocytoma, but found nothing. They decided since nothing they have tried has helped, it must be her fault (e.g. she must not have been taking her meds), despite the fact that while in the hospital they had control of her meds and some were given IV When discharged, she was still having episodes of high BP, although not as high (over 200 systolic, 120 diastolic) as she had been having. From some of what she told me about questions she was asked, I can only guess that they might be thinking Munchhausen's, and they even brought in a psychiatrist to see her (which really pissed her off when she found out), although I defy them to come up with an explanation as to how she might be causing this or why, if they were correct, she hates being in the hospital and now refuses to go back.

I did speak with her cardiologist, who has since fired her as a patient. He sounded very frustrated and fed up with not being able to help her, and clearly thought she was the cause. I tried to get him to look at how if he felt like giving up, imagine how she must feel, but apparently to no avail.

No ideas what to do next, and she is so fed up she doesn't want to do anything. Some of the meds they discharged her with she is taking, one she says she told them she refused to take because she had taken it before, it didn't help, and caused too many side effects, but they prescribed it any way as if they could care less.
 John Kenyon, CNA - Fri Apr 06, 2007 11:58 am

User avatar Hello psyclops615 - Well that sure would seem like a waste of time and energy. Hopefully something positve will eventually come out of it, although at this point I'm not at all sure how that might happen.

The frustration of doctors is often quite palpable when they are faced with a seemingly unanswerable question. Your sister certainly doesn't sound, based on what you've posted here, like she would be a candidate for Dx of Munchausen's, never mind the fact that she was, for a period, completely under the observation and management of hospital staff and providers which, as you point out, makes Munchausen's extremely unlikely unless this were being played out on a TV drama. In fact that notion (Munchausen's) never entered my mind til this posting, and it just won't stick. It's fortunate no one actually said it out loud.

Still, her dismissal by her cardiologist seems like an awfully desperate (on his part) reaction to a difficult situation.

Hopefully something more will emerge with time that will expose the culprit in this baffling situation. In the meantime about all I can suggest is that you both hang in there and, of course, explore additional diagnostic sources.

I wish you and your sister the best. I also wish I had more to offer. Do stay in touch.
 psyclops615 - Thu Jun 28, 2007 8:56 pm

Since my last post my sister has seen several different doctors, been hospitalized several times for dangeously high BP and is back in the hospital again one day after having spent two weeks in the hospital!

After exhausting treatment options in her hometown, she had been going to a cardiologist at Vanderbilt who did the same thing as every single doctor she's seen, put her on a variety of anti-hypertensives, none of which have done anything. I've lost track of all the different things she's been on, but she said last week she was on 14 different medications, 5 of which were for hypertension. Clondine is the only thing that seems to help her BP a little, but it turns her into a zombie.

Over two weeks ago she went to her local emergency room, short of breath, chest pain, and red flushed face, and with very high BP, so they admitted her. But she couldn't hold down any food, and kept throwing everything up, including all the pills they gave her. So, the cardiologist called in a gastroenterologist, who determined her gall bladder needed to be removed. So they scheduled her for immediate surgery. One small complication...they can't do surgery with her BP so high. So they feed her more BP pills, which of course she promptly vomits back. Each day they schedule her for surgery the next day, only to determine the next day her BP is too high to do surgery. Duh! They've been pumping her full of various combinations of anti-hypertensives for over six months now, without any results, so they keep doing the same thing over and over again!

This went on for two weeks until finally they did surgery Tuesday and removed her gall bladder. She said the surgeon said it was the worst gall bladder he'd ever seen. She was discharged yesterday. The only problem is her BP is still over 200/120 + and she still cannot eat anything or hold down any food or pills.

Today at the urging of a neighbor she went to see another new doctor because she was still in such terrible shape, who brought in another new cardiologist and she's back in the same hospital again with the very same symptoms she had two weeks ago. This cardiologist thinks it obviously wasn't her gall bladder that was causing her g/i disturbance so he's bringing in another gastroenterologist. And he thinks her BP is related to her hx of WPW...which her previous hometown cardiologist said was impossible, and then when she told the cardiologist at Vanderbilt about her hx of WPW, he initially thought that could be it but later decided no way.

Are all these doctors "nucking futs", incompetent morons, or is her case just beyond medical comprehension? With BP that high and unable to eat anything now for over two weeks, she's going to die and all they do is go around in circles. All they've been able to determine now after numerous hospitalizations and surgery is that her BP is normal when she's asleep.

Anyone have any ideas how to save her life?
 John Kenyon, CNA - Thu Jun 28, 2007 9:58 pm

User avatar Hello again! I am really sorry - and somewhat discouraged - to learn that so little has changed in your sister's situation. Well, I guess there have been changes, but nothing about the essential problem has changed. I have to admit it seems to be a really bizarre thing. As I was reading your post I was hoping I'd find the gallbladder was somehow causing reflex hypertension. The gallbladder sometimes can affect the sympathetic nervous system, although I don't understand the mechanism. But that obviously wasn't the answer. Further, although I can think of no causative connection between WPW and malignant hypertension, the electrical derangement is due to an abnormally developed nerve pathway. This got me to grabbing at straws, one of which is that perhaps in rare WPW patients there are other, cardiovascular-related nerve tissue derangements, since those develop in vitro at about the same time. Perhaps there is something wrong with the baroreceptors or some other part of the sympathetic nervous system. I'm beginning to wonder if maybe there isn't some other accessory pathway that's developed early on in her sympathetic nervous system which carries inappropriate signals to this area and tricks something into believing the blood pressure needs to go up. It could cause a chronic constriction of the blood vessels, which would naturally keep the pressure much higher than it's supposed to be.

Has anyone tried givng her even a single dose of nitroglycerine? It is a potent vasodilator. If she responded, even momentarily, to this with a significant drop, then it would suggest something is causing a constant constriction of the blood vessels like an overdose of pseudoephedrine would. If such a trial was successful then at least a nitroglycerine patch might keep her blood pressure lower temporarily. This is, of course, brainstorming out loud, but if there is some short circuit that is causing any player in the blood pressure regulating mechanisms (again, WPW just led me to think if it can occur in the heart it might also exist somewhere else) then denervation by some method could be the solution to the problem. How this would be determined and how it would be corrected I really don't know, but at this point we have to consider hypothetical scenarios which are rarely seen. After all, it is extremely rare to see a patient in which almost nothing will control the symptom.

I wish I had something more to offer. I don't think the doctors are nuts, but they may well be constrained by the need to think within the generally known and understood diagnostic algorithims. Unfortunately, once in a great while a square peg turns up. It takes someone with unique vision as well as tremendous knowlege to solve this sort of mystery. I only hope you and your sister find such a person and soon.

Again, I wish I could offer something more, but this would seem to fall outside the box. Hopefully someone else here has more insight into this sort of problem, which is certainly rare, strange, and infuriating. My thoughts are with your sister and with you as well, as you have invested so much energy, time and emotion into helping to get this solved.

Thanks for the update, and please do let us know of anything new you may learn.
 psyclops615 - Mon Jul 02, 2007 5:58 pm

Thanks for the response, and for trying, John. As you can probably tell, I am extremely frustrated with the situation and fearful for my sister.

Yes, she's been on nitroglycerine prn, and according to my sister it did intially help some....not lower her bp to normal but bring the systolic down below 200. However, the night she went to the er three weeks ago, she said her BP was way up despite her regular oral meds, she took a nitroglcerine, and it did nothing to help at all.

After being in the hospital for two weeks, and being home less than one day, she has now been back in the hospital for about a week now, under the care of a new internist and new cardiologist. At least these guys are willing to try something different. I'm not sure what all she's on now, but they gave her hypertension meds via IV and her BP has been down (for her, she said around 160/100) for several days. She said her doctor said anyone can get your BP down with meds via IV; if so, I have to wonder why the geniuses who were previously her attendings kept giving her meds orally when she could not keep ANYTHING down and thus had to keep rescheduling her gall bladder surgery for two weeks because her BP was so high.

Of course, with all the IV fluids they're giving her, she looks puffy and bloated, like she needs about a ton of lasix, so that probably is causing her BP to be up some. But, according to her, this is the best BP control anyone has been able to achieve for her in months of trying.

The current doctors gave her an enema thinking the recent bout of regurgitating everything might be due to constipation. Whatever they're doing, she has improved, and has been able to hold down a liquid diet for a couple of days. However, when I called her earlier she was vomitting, which she attributed to all the junk (don't know what) they're making her drink in prep for a colonoscopy tomorrow. (When I had mine done a couple of years ago, all I had to do was drink some laxative mixed in a gallon of Gatorade.) She had endoscopy during her previous hospitalization, so I guess they're trying the other end this time. ;)

At least she seems to have more faith in these doctors, and unlike some previous ones, both seemed to have made A's in Bedside Manner 101. She says her current cardiologist has plans to look into the possibility of recurrence of WPW after they've been able to keep her BP out of the danger levels.
 psyclops615 - Wed Aug 15, 2007 6:51 pm

Well, since I last wrote, my sister has practically been living in hospitals. They'd put her in for a couple of weeks, get her BP down with IV meds, get her stomach stable enough where she could hold down jello, counsel her to take her BP meds orally, and then discharge her. She'd be back within 48 hours with high BP, once almost 300/200 she said, and vomitting everything up. They'd put her in ICU, get her BP down again via IV, and lecture her about taking her pills outpatient.

Duh! She hasn't been able to hold anything down before they took out her gall bladder a couple of months ago. What makes them think she can hold down her BP pills?

Her local hospital finally gave up on her and transferred her to a major hospital here in the city last week. Of course, sending her records with her would have been too easy, so the doctors here have repeated everything that's been done the last 20X she was hospitalized. But at least she finally got a doctor that was willing to think outside of the box, didn't assume it was all in her head and bring in another psychiatrist, and entertain the notion I've been saying all along...she does not have the normal hypertension that many people get as they age, and treating her for essential hypertension is a total waste of time.

They ran some new tests on her yesterday and have concluded her renal artery is almost completely blocked. According to my sister, her doctor says that's what's been causing her rapid BP spikes all along. It may also explain why one time they claim her kidneys have shut down and she needs dialysis, but the next time they test her her kidneys are fine. It may even explain all the g/i problems she's been having and why she hasn't been able to eat for many weeks now.

They're doing the cath in the morning, and possibly put a stent in. Maybe months-long the nightmare is almost over?

Thanks for listening, John, and trying to help.
 psyclops615 - Thu Aug 16, 2007 7:10 pm

Well, it looks like our rejoicing was premature. My sister said the cardiologist dx her as having a blocked renal artery on the basis of an MRA (not MRI, and I'm not familiar with an MRA although I gather it is somewhat similar) that showed her renal artery was almost completely blocked. So today they did the cath and were prepared to put a stent in. Only once they got in they found absolutely no blockage at all. So we're back to square one again.

The attending's brilliant plan? They're going to discharge her and refer her to their pain program and also to a psychiatrist because they think she's depressed. OF COURSE she's depressed. This has been going on for almost a year now, but they have the cause and effect backwards. And now they're on my turf because I used to work with both populations, and helped start their pain program, so I know that program is for people with chronic pain problems where traditional medicine has done everything it can, and the patient now needs to learn to better cope with a chronic condition. What he's really saying is I have no clue as to what to do next, so I'm going to punt and cover my ass, so I can safely wash my hands of the case and be rid of her. Which is what has happened with the last dozen or so doctors she's seen.

So, what does the future hold in store? Unless someone can figure out what the true etiology really is, she will be discharged tomorrow, unable to eat or hold down any food, much less the BP pills they give her, and within two or three days she will be rehospitalized with BP spiking at over 250/150, which is what has happened the last several times she was discharged. And they'll blame her for allegedly not taking her BP pills and want to call in a psychiatrist.

Anyone have a clue? Here are her primary sx over the past year:

Fluctuating BP that can go from normal to stroke levels in just a few minutes. It stays fairly normal when she's asleep, although it sometimes tends to start rising shortly before she awakes, During the day it can fluctuate from 120/70 to typically around 230/150, but it has gone much higher. When very high it is usually accompanied by SOB, flushing in the face, crushing sensation in the chest, and severe headache.

Over the past several months:

Increasing G/I disturbance to where she has been able to eat practically nothing for the past three months, except for a bland liquid diet when given something like phenergan right before eating. She reports constant nausea, frequent vomitting to the point of dry heaves, general pain in her abdomen, and occassional sharp, shooting pain in her abdomen that she says feels like someone punched her in the stomach.

Phantom kidney problems. Three times now, to my knowledge, she's been told her kidneys were completely shut down and she may need dialysis. But when seen by specialists she's told her kidneys are fine. Sometimes she urinates normally, other times she can go days without. Right now she has not urinated in about 36 hours so they put in a cath.

Phantom renal artery blockage. They said it was almost completely blocked yesterday, today it is fine.

Phantom gastro paresis. She was dx with that last week in her local hospital, which is the main reason they supposedly sent her to a major hospital here in the city. And shortly after being admitted here, she was seen by a gastroenterologist who in a matter of minutes said she definitely does not have gastro paresis and whom she has not seen since. Since then, she's been seen primarily by the internist/attending, a cardiologist, and now by a radiologist.

Gall bladder surgery. She never had problems with her gall bladder before, but a couple of months ago they decided that's what was causing all her g/i problems and removed her gall bladder. She said the doctor who removed it said it was the worst gall bladder he's ever seen. Except she still can't eat and still has the same g/i problems, only worse.

Phantom cirhossis. Two days ago they told her her liver was severely swollen. Today it is fine.

A couple of times now they were convinced she had pancreatitis. Only a couple of days later she didn't have pancreatitis.

Yesterday she was running a fever of 101, etiology unknown. Today she is fine. She doesn't think she was given any antibiotics.

Eye problems. She's seen an opthamologist a couple of times now because on progressively bad vision, who thinks she has hemmoraging in the eyes, probably as sequellae to the bouts of high BP.
 debhenry - Tue Feb 26, 2008 9:43 am

I have been wanting to reply to "psyclops615" ever since I read his story last fall. But it wasn't until today that I was able to register to the forum. I want to let him know that his sister is not alone. Her story is my story!! I too, have had EXTREMELY fluctuating blood pressure episodes for the past year. I have been rushed by ambulance to the hospital 6 times in 11 months with BP reading of 220+/140+. I feel like I am suffocating, going to pass out, have chest pressure and nausea, dizziness - and feel like I am "on my way out." It is really scary. Especially since these episodes come with no warning - sometimes while I am sleeping or just relaxing or sitting at my desk and sometimes when I am upset. In between episodes my BP is uncontrollable. I am on Labetolol and the BP fluctuates constantly (and within minutes) from as low as 90/55 to 160/95. And it makes me feel weird, and I always have a slight headache and ringing in my ears. My doctor is baffled. I have had every test in the book for kidney and heart problems. And everything is normal!

And like the woman in the story, I too had a history of WPW and had a catheter ablation done 9 years ago. And I also am wondering if the long term effects of the ablation could have something to do with what I am going through now. I noticed that ever since the ablation, I lose my breath easily. I have always been very active - mountain biking, kayaking and hiking. I still do all those things, but ever since the ablation, I can't make it up a hill without stopping because I get totally winded. I am one who hates elevators and had always walked the stairs as long as it was under 10 flights. But now it takes me too long, because I have to stop so often to get my breath. And for the past two years, I noticed that cuts and bug bites can take up to 8 months to heal - they always get infected and fester for months. I have been checked for diabetes and my sugar is normal. But something is causing poor circulation. I would love to know if there are any others out there who have had ablations and are experiencing the same things.
If so, I would like to hear from you! Thanks.
 bjacob26 - Sat Mar 15, 2008 9:17 pm

I am a 52 year old male with rapidly fluctuating BP wich ranges from 120/70 to 195/115, my eyes have problems and get blurry, my back hurts offten, the head ace associated with the HBP is continous and I have chest pains that come and go frequently. I was diagnosed with Prostate cancer and removed it in late 2005. My HBP problem started 3-4 months after the surgery and as pysclops615 and debheny discribed no one (cardio/general/gastro/etc..) could pinpoint the problem or come with any medication that can help. I have tried 7 different BP medications, depression medications, gastro medications and so on and none have helped so far. I had my galebladder removed about 15 years ago, and Appendix removed over 43 years ago. If anyone has any solutions or even insight into this issue I would also love to hear about it.
 psyclops615 - Tue Jul 01, 2008 7:40 pm

Sorry I haven't been on for quite a while but until today there's been nothing new to report. But I've got some good news about my sister that might yield some hope for deb and bj who report similar symptoms to what my sister had.

Basically most doctors she'd seen had given up on her, many of whom "fired" her assuming she was either willfully noncompliant with meds or assuming it is all "in her head" and wanting her to see a psychiatrist. But my mother had seen a report on some TV news show about someone with similar sx that was helped by a new experimental device being investigated I think out of Rochester, NY. Naturally this would not be covered by her insurance, but as she checked into it more and thought this might be helpful, we we thinking of flying her up there and paying for it ourselves. But my sister's perseverance paid off and she discovered they were thinking of opening clinical trials here at a local major hospital. She got signed up right away, was accepted into the program, and had surgery yesterday to implant a device under her collar bone that is attached to the baroreceptors on the carotid artery and applies a small electrical charge. I think its called a baroreflex activating stimulator and I can post a web site that tells more about it and the company that makes it. The bottom line is so far the indication is that its going to work great. When they first tried it and applied a small charge her BP dropped 60 points. They have to wait 30 days for her to heal before they can program it and use it all the time, but tests yesterday and today have the staff very optimistic it will be successful.

I gather they've been experimenting with the device in Europe for awhile, because they were flying in a doctor from Europe to supervise the local surgeon but he had to cancel so they got someone he'd trained here in the states. It's only been done less than 3 dozen times here in this country, and since my sister is the first in this region, they will not be using her data in the clinical trial so she gets to keep the device on all the time instead of on/off like they will be doing with patients in the clinical trials.

The bottom line is we're now hopeful this will allow her to return to a normal life, so there is hope for people with similar problems. So, don't give up bj and deb! And to all the doctors who wanted to put the blame back on her for this, all I can say is, "Ththththththth!"
 debhenry - Mon Jul 07, 2008 2:48 pm

I will be waiting to hear how your sister does with this new device. I just went through a battery of tests at the Mayo clinic and they found nothing and are suggesting that I see my gynocologist to see if it is hormone related. Right now I am tired of seeing doctors and am going to try to live with it for awhile. Let us know how your sister does.
 John Kenyon, CNA - Wed Jul 09, 2008 3:48 pm

User avatar Hello again psyclops615 -

Last things first in this instance, since I have been away for a while and have now caught up with your sister's travails and this newest development. I will also reply to the others in the thread, here, but you were the originator, and your poor sister is the one who went through all this craziness.

I am so relieved to hear what you've reported! I have a notion that a few (probably very few, but I know of no studies one way or the other so far) who have had radiofrequency ablations just may have some other parts of their autonomic nervous system affected by the procedure, depending on variables too numerous and complex to cover here. However, this would possibly explain why this very disturbing problem began and is now responding to the new therapy, which is one I only recently learned of myself. I am very encouraged to hear this, as the nightmare may now be ending. You have been an incredible support for your sister during all this awfulness and you deserve something more than a medal for sure!

Please do keep us updated, and I am back, and I will be here!
 John Kenyon, CNA - Wed Jul 09, 2008 3:57 pm

User avatar Hello debhenry and welcome to the forum -

Right off the bat I am intrigued by the similarities between your situation and that of psyclops' sister's. Since you both formerly had WPW and ablations I am suspecting that there is some heretofore unproven association between the two, especially since the autonomic nervous system is like the electrical system in, say, a home theater component, and many of the circuits are connected. That RF intruding, especially on part of an autonomic system which already had an abnormality (the WPW accessory bypass tract), may just mean that either the ablation somehow manages to affect the relatively distant baroreceptor apparatus, or that perhaps WPW, as a congenital defect, may also be associated with baroreceptor abnormalities. At any rate, this certainly does seem promising in the one case, and may well be worth bringing to the attention of your own doctors. I would also suggest you take note of the earlier suggestions as to what may have been causing the problem, such as pheochromocytoma, kidney problems, etc. Pheochromocytoma is very often associated with sudden spikes and drops in blood pressure due to abrupt output of excessive (and utterly unwanted) adrenaline from the little adrenal tumors which cause this condition.

Still, I have a feeling the WPW/ablation link may be worth a first mention.

Best of luck to you and please do keep in touch here.
 John Kenyon, CNA - Wed Jul 09, 2008 4:09 pm

User avatar Hello bjacob26, welcome to the forum and to this thread -

This has certainly turned into quite an interesting and broad thread since last fall! You describe symptoms similar to those of the others here, but they are at least a little more consistent with what one encounters in many hyptertension patients. I suspect, in your case, what you might want to do if you haven't already, is to go back to the early posts and responses in the thread and read the suggested potential causes (all of which did not pan out for psyclops' sister, but could be very useful to you). While you also could have some disorder of the baroreceptor system, it seems more likely that your problem is probably nearer the kidneys. Since many of the obvious possibilities have been explored and discounted by a good number of doctors in various specialties, it may be time for you to visit an endocrinologist, as many times kidney problems can cause this sort of spiking. And of course right on top of the kidneys sit our adrenal glands, which are sometimes plagued by a peculiar sort of tumor which causes a condition I've mentioned in the responses above, called pheochromocytoma. This can cause rather sudden and often severe spikes in blood pressure, cardiac output, etc., and the tumors may not necessarily be located only on the adrenals, but can be very tiny and located almost anwhere inside the thoracic cavity.

One useful and fairly simple test for this is a 24 hour urine test to look for abnormal levels of adrenaline there. There are, of course, other tests as well, but if you haven't had this avenue explored I would highly recommend you ask for a referral to an endocrinology specialist, and to carefully read through all the rest of this thread as well. It would be far too much to repeat here, and it's already up there.

Meanwhile, I hope this finds you well and I hope you will keep us updated as to anything new you learn or anything at all.

Best of health to you.
 debhenry - Thu Jul 10, 2008 1:08 pm

Hi John,
Thank you for your response. Since I have had every test possible for kidney and heart problems, I was very glad to hear that someone else might also think that there could be a connection between the ablation and the symptoms I am experiencing at times. I have not felt the same since I had the ablation, as I have had problems with getting winded easily from the day I came home from the hospital. Then when I went through menopause, the other symptoms with the blood pressure, etc. started. So, it looks like hormones play a role in this too. Knowing how complicated the human body is, it amazes me that more things don't go wrong with it!
Thanks again for posting you comments. I will keep watching this website for more information.
 John Kenyon, CNA - Thu Jul 10, 2008 3:25 pm

User avatar Hi Deb,

Well, coming from me and based on very limited and anecdotal evidence it barely qualifies as a theory, but I have a feeling, a hunch, and your story only makes the hunch stronger.

Combine that with a big hormonal change and the possibilities for new, strange and not always pleasant subjective feelings certainly do multiply. The good news is most of that will pass and things will level out once again. Hopefully for you that will be much sooner than later.

Thanks for your reply and please do keep in touch.
 psyclops615 - Thu Jul 17, 2008 6:14 pm

Thanks for the support, John. Nothing much new to report. My sister's been having some pain and numbness post surgery which they say is normal for this type of invasive procedure and nothing to worry about at this point. She was pretty miserable at first but is slowly getting better. Her BP is now as bad or worse than it ever was...she said it was 250/150 at one point last week, so we can't wait for the end of the month when they can fly someone in to program the device and turn it on for good. I was intrigued by some of the technical aspects...they program the device externally, I guess via something like wi-fi.

Deb, best wishes to you. I'm as interested as John with the possible WPW connection. Also, I might mention this all seemed to flare up about the time my sister began complaining of hot flashes as she went through menopuase, so I wonder if John is correct in thinking there might be a hormonal relationship here. I'll need to ask her about the details and the exact proximity between her BP beginning to fluctuate and when she entered menopause.

Will keep y'all posted if any new developments, particularly after they turn the device on.
 John Kenyon, CNA - Fri Jul 25, 2008 10:56 pm

User avatar Hello -

It's good to hear from you, even though things haven't dramatically changed as yet. That's still some pretty high BP, but maybe once things are running smoothly that will change. The programming is done via magnets as a rule, and usually is totally non-invasive and non-intrusive, although it can make the patient feel odd for a moment or two during the process. This seems more likely in your sister's case because if that blood pressure drops to anywhere near normal she may feel quite lightheaded for a while. If that happens it will resolve, and it will be the best outcome (minus any lightheadeness) if it does. Please do let us know, and thanks for checking in here.

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