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Can U Help Me Help My Docs? Hr & B/p Crazy...


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Hi -- Needing some guidance if you can help.....

I've got that joint hypermobility thing -- or EDS=HM type and my b/p and my heart rate are giving me fits. I initially saw my primary for a baseline HTN <---- hypertension - with bouts of low b/p mostly happening after working on my feet for four hours as a cook. My b/p is high -- with the diastolic or bottom number or most important number never under 100........ Often 106 to 112....... Such as 152/110 =---> But because I also dip down low my doctor sent me to cardiology

When it dips it's after working and I am very symptomatic and it takes 2 or more hours of lying flat in bed before I feel 'recovered' for lack of a better word.... The lows are in the 90's over 60's and I feel dizzy. I was on Diovan alone at first but cardiology added Metoprolol 50mg because my holter monitor showed I am tachy with my heart rate most often over 100.......

Well I'm afraid of having a stroke with that high blood pressure most all the time. Then cardiology did a stress echo today. I was told to stop my Metoprolol for 48 hours prior to the test. Well my blood pressure shot way up to 177/122 and I had the worst headache of my life night before last. I called the oncall doc who said take the Metoprolol and go to ER. I did and everything gradually got normal - HA went way, b/p down to 144/106 - and they were happy I didn't have an aneurysm -- but no one much cared about the blood pressure.

So I go have the stress echo today and the doctor says it's a good healthy heart. No issues. I told him I'm worried about a stroke running around MOST of the time with diastolics in the 100's. He counters well you also go low and I don't want you fainting at work. I said good point but I usually only dip low once or twice a week after working on my feet -- the majority of the time I'm high and worried about it.

He said you are an unusual case and he didn't know what to do -- he says you have labile blood pressure and I'm not going to medicate you more. I asked him if he knew of other workups for labile b/p -- for say -- tumors etc.... He asked if anyone checked for Pheochromocytoma -- I said no. So he ordered catecholemines and metanephrines one by urine the other by blood. He clearly said he's not an expert on hypermobility syndrome issues.

Okay that's about it -- All of this seems to me to be related to my EDS-HM perhaps with pooling etc.... But I wish I knew who to see about it - who IS comfortable seeing patients with crazy labile blood pressures and odd diagnosis..... The neuro doc locally and at a major center miles from here both uncomfortable with it - neuro stating she treats it only with MS etc.... The major medical center thought my fatigue was psychological (prior to my holter etc.)

I wish I knew what labs to ask my primary doc to order or to suggest to order that might go with a dysautonomia diagnosis.......... Do you have suggestions for labs? Do you have suggestions for medications for me to run by her? A doctor recommendation?

Without the Metoprolol just standing my b/p was 120's -- but the doctor doesn't seem that impressed or he's hugely uncomfortable with dealing with this........And to be honest the 50 of Metoprolol isn't helping me symptom wise -- I still get tachy with standing -- I still get dizzy from standing too long -- I get orthostatic hypertension --- I have high uncontrolled blood pressure. Who do I go to with this??

Again I would fly anywhere to get someone who can help ..... I exercise daily - I've dropped 20 pounds in the last couple months , I eat healthy and my regular labs are very good. I need to keep losing weight -- But in the meantime I'm worried about these widely fluctuating blood pressures and nobody yet cares to do a tilt-table test -- they believe it to be overkill or perhaps ridiculous -- like so what? I tell them there are multiple kinds of dysautonomia caused by a million and one different reasons -- may I please get a true diagnosis so treatment is appropriate? They say no to this test......

Any suggestions appreciated -- thanks so much -- I'm losing my patience and I need help!

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I have labile pressure.

You might want to make sure your lab results for pheochromocytoma are negative before seriously thinking about longer term treatment. Assuming they are negative, this is what I do now ...

I'm now on Clonidine and when my pressure gets high, I take 1/2 tablet first, then another 1/2 if it doesn't go down enough (that happens fairly frequently). I take my pressure to figure out if I want to take it. It took me 3 or 4 tries to see that it worked.

It didn't seem to lower my pressure quickly if at all at first. I think it may take even up to an hour to kick in. It can raise pressure in certain circumstances so you should watch for that (that would depend on some of the mechanism of your autonomic problem -- so when I was worried about that the first two times [i thought it rose in fact and a doctor had to tell me to take the whole pill; I still do half at first but now do add on], I took metoprolol) -- you might want to ask your doctor if you go on that med and don't see a drop in pressure, if you can do that. But a few trials showed me that it worked.

I also take Mestinon.

I do a lot of this depending on symptoms.

I am imagining you don't get good control if you medicate following instructions (e.g. a set amount at a set time every day) but I should also say the doctor didn't tell me exactly how to take these and I'm at a point where I do some of my own thing (bad self-reliance happens when you get no treatment for a number of years and self-treat with over-the-counter meds for complications in total desperation. If a doctor doesn't tell me how to take a medication now, I'm okay with that). And I do think what I'm on (now) are good meds for me at least with symptoms I have now ... and meds which help with a lot.

You can either make up your mind ... or follow instructions if that's the place you're at in your treatment.

If they think you have an autonomic function problem, that's good. A tilt table test is no fun.

Do you feel okay on the Metoprolol (I mean does it make anything worse)? If it's not a good medication for you, you should ask to see if you can try somethng else.

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Thank you for your kindness in answering. I did ask the doc about catapres which I think is clonidine and he said, "why would I give you another medication when you sometimes dip low?" It gets frustrating.

I would like to think that giving the patient with a good understanding of his issues - his own license to titrate meds to effect would be reasonable with these touchy cases. Meaning it would seem that it should be okay if a doctor knows that some meds are needed just some of the time and not needed each day.... I just don't know at this time which meds might help me.....

The doc pulled me off my diuretic except for once a week now -- my primary is stumped why the cardiologist did this when she sees my continued high blood pressure for 'most' of the time...

The metoprolol has been for just over a month - what I noticed at first was that my true resting heart rate initially seemed lower - say in the seventies and I hadn't seen that in years... But just standing it would still be about 106, walking the 1-teens, and then a brisk walk the 120's.... Walking uphill in the 150's... It essentially has done nothing at all for improving blood pressure -- and his pulling of the diuretic has left me with higher pressures than the pre-metoprolol....

But he pulled it due to 'I don't want you too 'dry' as it could contribute to your feeling 'faint' after standing long times'.

I'll look at what that other med you mentioned is.........I'm happy you wrote about labile blood pressure -- I did have a cats and mets test 20 years ago in my 30's and it was negative and the doc said way back then - hmmm....you just must run at a high adrenergic state - asked if I wanted medication to slow my HR and back then I said, "heck no!" because I was young and healthy -- just annoyed with the tachy hr.... Now it's becoming an issue with symptoms and I just wish someone knew what was going on and how to help me help myself :-/

thanks again ;-)

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Hi,

I have the hyperadrenergic POTs and I also have the labile blood pressure. I am also on catapres/clonidine. It calms everything down for me. I take it everynight at the same time, but I also take it when I am very symptomatic. When my blood pressure rises my pulse pressure narrows signifigantly. Of course my normal pulse pressure is pretty low anyway. The clonidine has really helped this problem, which makes me feel a lot better. If you don't have pheochromocytoma I would push to be put on the clonidine as I believe it is one of the first meds tried for the Hyper POTs which is probably what you would have with the standing hypertension. I would definitely try to get an appointment with someone who knows about dysautonomia. If your in the States there are quite a few places to go around the country. Good luck and I hope you get some help.

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Is the second time a charm with this pheochromocytoma test? Or third? Or sixth?

Or are they pretty sure that you had a "high adrenergic state" then and now they have some suspicion that that state morphed into (or that you subsequently developed) pheochromocytoma?

I guess they're doing the sensible thing. I guess pheochromocytoma patients are super common and people with autonomic problems are like one in a million.

Mestinon is an acetylcholinesterase inhibitor and there are articles about how it lowers heart rates in POTS patients. (There are also some on how it elevates standing blood pressure). There would be some other reasons to use it other than the effects on pulse/blood pressure and I asked maybe more for those ... in fact, this medication really did an awful lot to improve my quality of life but it may be hard for you to get if they're doing the simplistic analysis they appear to be.

I'm pretty sure my blood pressure goes to normal when I lie down and usually gets higher as I stand longer (you sound a little different) but it's really quite complicated by weather phenomena, whether I cool my body down with wet rags or a vest, and maybe even hydration status (I may not be drinking enough and that may help lower the highs and raise the lows [think of the implications of that for a medication which could increase blood volume for example]). So I'll use various fixes throughout the day.

I have a real belief that if I feel better with the medications I'm on, my health is inordinately better. Nonetheless, it can be hard to get what you need because nobody is evaluating for us whether compensatory mechanisms are at work for any given symptom/laboratory measurement and nobody specializes in patient care/management of these diseases the way they do with diabetes and essential hypertension.

Out of curiosity, do you feel better on the diuretic or notice a difference with a different dose?

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This is Dr. Grubbs recommendations for hyperadrenergic POTs if that is what you end up diagnosed with:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

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Hi -- Needing some guidance if you can help.....

I've got that joint hypermobility thing -- or EDS=HM type and my b/p and my heart rate are giving me fits. I initially saw my primary for a baseline HTN <---- hypertension - with bouts of low b/p mostly happening after working on my feet for four hours as a cook. My b/p is high -- with the diastolic or bottom number or most important number never under 100........ Often 106 to 112....... Such as 152/110 =---> But because I also dip down low my doctor sent me to cardiology

When it dips it's after working and I am very symptomatic and it takes 2 or more hours of lying flat in bed before I feel 'recovered' for lack of a better word.... The lows are in the 90's over 60's and I feel dizzy. I was on Diovan alone at first but cardiology added Metoprolol 50mg because my holter monitor showed I am tachy with my heart rate most often over 100.......

Well I'm afraid of having a stroke with that high blood pressure most all the time. Then cardiology did a stress echo today. I was told to stop my Metoprolol for 48 hours prior to the test. Well my blood pressure shot way up to 177/122 and I had the worst headache of my life night before last. I called the oncall doc who said take the Metoprolol and go to ER. I did and everything gradually got normal - HA went way, b/p down to 144/106 - and they were happy I didn't have an aneurysm -- but no one much cared about the blood pressure.

So I go have the stress echo today and the doctor says it's a good healthy heart. No issues. I told him I'm worried about a stroke running around MOST of the time with diastolics in the 100's. He counters well you also go low and I don't want you fainting at work. I said good point but I usually only dip low once or twice a week after working on my feet -- the majority of the time I'm high and worried about it.

He said you are an unusual case and he didn't know what to do -- he says you have labile blood pressure and I'm not going to medicate you more. I asked him if he knew of other workups for labile b/p -- for say -- tumors etc.... He asked if anyone checked for Pheochromocytoma -- I said no. So he ordered catecholemines and metanephrines one by urine the other by blood. He clearly said he's not an expert on hypermobility syndrome issues.

Okay that's about it -- All of this seems to me to be related to my EDS-HM perhaps with pooling etc.... But I wish I knew who to see about it - who IS comfortable seeing patients with crazy labile blood pressures and odd diagnosis..... The neuro doc locally and at a major center miles from here both uncomfortable with it - neuro stating she treats it only with MS etc.... The major medical center thought my fatigue was psychological (prior to my holter etc.)

I wish I knew what labs to ask my primary doc to order or to suggest to order that might go with a dysautonomia diagnosis.......... Do you have suggestions for labs? Do you have suggestions for medications for me to run by her? A doctor recommendation?

Without the Metoprolol just standing my b/p was 120's -- but the doctor doesn't seem that impressed or he's hugely uncomfortable with dealing with this........And to be honest the 50 of Metoprolol isn't helping me symptom wise -- I still get tachy with standing -- I still get dizzy from standing too long -- I get orthostatic hypertension --- I have high uncontrolled blood pressure. Who do I go to with this??

Again I would fly anywhere to get someone who can help ..... I exercise daily - I've dropped 20 pounds in the last couple months , I eat healthy and my regular labs are very good. I need to keep losing weight -- But in the meantime I'm worried about these widely fluctuating blood pressures and nobody yet cares to do a tilt-table test -- they believe it to be overkill or perhaps ridiculous -- like so what? I tell them there are multiple kinds of dysautonomia caused by a million and one different reasons -- may I please get a true diagnosis so treatment is appropriate? They say no to this test......

Any suggestions appreciated -- thanks so much -- I'm losing my patience and I need help!

You sound hyperadrenergic. I'd recommend suggesting and ACE or ARB, along with mestinon. to modulate the postural tachycardia. I just posted, expressing what's worked for me, and I've tried most of the primary meds. Good luck.

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Hi everyone and a huge thank you for your thoughtful responses - I know they take time out of your day & want you to know I'm grateful to read them.

I do take Diovan 320 mg (the ARB)....& I'll ask my primary about returning to the daily dyazide. True I was turfed to cardiology for the occaisional 'lows' that were pre-syncope spells while standing on my feet working 4 hours..... Then was reminded of my tachy state by the holter with baseline HR100.... After that ER trip and rethinking things -- I'm not taking the metoprolol again - I'll see my internist tomorrow and run that by her....it didn't in the end do much at all - & if pulling it gave me that horrible high bp state and severe headache I just don't want it. Dyazide doesn't effect me noticeably as regards these sx's -- but I think it may have contributed to my b/p helps -- as my b/p got higher off it and the metoprolol wasn't a good trade off.

My pain management doc I see this week too. He's experienced with Catapres as it has other uses in medicine and treatment than my issues.... He might just have the nerve to go ahead and give me a trial on it .... I'll review with him all that you've taught me here and all I know of my 'condition'.... EDS-HM with labile b/p and sinus tachycardia -- & increased bp with rising from sit to stand...bouts of presyncope with standing too long. In another state back east in my late 20's was when a doc said, 'you run at a high adrenergic state' -- when I questioned my high HR all the time -- so 30 years ago I was tachy and I don't suppose it's a pheo now (as it wasn't then) - but I do now flush quite often in a day and aslo for the first time in my life I sweat! I have never/rarely ever broke a sweat. Now just walking and window shopping I feel drenched and my face can need a wipe with a tissue... Maybe it's hormonal -- I give up - I'm 53.... And headaches come a couple times a month -- I think b/p related -- but they'll r/o pheo for certainty I suppose.

Firstly though I see my primary tomorrow -- I'll show her the labs ordered by cardiology for pheo and ask her to order things that she might be knowledgeable about as regards this.....Did I read here that you can test specifically for a norepinephrine level? In addition to the cats and mets? Any lab suggestions before tomorrow I'd really appreciate to help this along....

I guess I'd have to agree that a hyperadrenergic POTS diagnosis might fit my set of symptoms -- but how to get a doc to pull it together with a "plan" is like for many very challenging when the docs that specialize in this are few and far between. I'm going to look into that doc mentioned that's moving back to Scottsdale....perhaps...a Dr. Goodman or something like that if need be. I'll read to my doctors the info you've given me - such as catapress and indications for .... & mestinon. I would love to feel better and get back to a reasonable state of vitality and energy --

I hope I answered your questions....thanks again

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HI ....

Well honestly I have never heard of pain medication increasing blood pressures....in my experience pain medications helped blood pressures of patients experiencing pain - as the pain markedly could increase their blood pressure -- as the pain symptoms diminished their blood pressure would decrease....& of course pain meds would be held if a patients blood pressure tanked for use of them. So is there something I need to know about dysautonimic disorders and the people that have them and how their bodies respond to pain meds?

thx!

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HI ....

Well honestly I have never heard of pain medication increasing blood pressures....in my experience pain medications helped blood pressures of patients experiencing pain - as the pain markedly could increase their blood pressure -- as the pain symptoms diminished their blood pressure would decrease....& of course pain meds would be held if a patients blood pressure tanked for use of them. So is there something I need to know about dysautonimic disorders and the people that have them and how their bodies respond to pain meds?

thx!

No, it's just that your pain can increase your HR and BP, as you suggest. Controlling it is important, as you also suggest. Drugs that I know have an impact on the autonomic system are Flexeril and Tramadol, as they affect serotonin and norepinephrine. I have first hand experience.

When my pain is better controlled, my BP tends to be less labile.

If I were you, I would be insisting on meds to get that BP down and would keep looking until I found a doctor that would work with me. It's sounds like you feel similarly.

Hang in there.

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Hello everyone again....

Interesting ... I do take Flexeril -- for about 4 mos. up to 3 times daily..... If there's a chance it would be helpful I am free to discontinue it -- it's just for my comfort. So perhaps if that'll decrease my b/p I'll give it a go.

I also just got off the phone with the Mayo Clinic in Scottsdale to get my appt. with Dr. Goodman. I got it -- but as soon as I mentioned my EDS-HM the office scheduling dept. was quite clear that they don't deal with that......I told her 'no worries....that dx is a done deal -- it's just that studies have shown up to about 81% of joint hypermobility syndrome patients have dysautonomia. So at this point it's assumed but not proven that's why I have it'.

She then asked me to mail my neck and spine mri results, my recent ER head CT results - all with the actual films or disks, and my EMG testing - and any pertinent consults ... When I mentioned I see cardiology because of this - she was not really interested in my holter or echo's etc. I feel so confused now in speaking with her I don't know what's on.....

In my mind it's multi-factorial -- Joint replacements = some nerve damage and some weak muscles in my legs.... Hypermobility Syndrome = explains pain and why the joint replacements and some of the fatigue. Dysautomia coincides with hypermobiity syndrome but is manifest in cardiac symptoms. I have cardiac symptoms - my cardiologists notes and testing to me are very important - or should be very important for a dysautonomic specialist....

She asked that I plan to spend a full week in Scottsdale in case referrals were needed. I can do that of course - but I'm getting scared now -- like I'll be hit with another -- she's crazy -- why did she fly all the way out here for a little bit of high blood pressure or labile blood pressure? Can anyone tell me if they think I am doing the right thing in this?

In the meantime I'll give a trial of no Flexeril....and cont. follow up with my primary care doc tomorrow and my pain guy. I feel anxious as regards this...........like -- should I see a Mayo cardiologist rather than a dysautomia specialist? Does anyone know what Dr. Goodman does at a new appt.? Will he diagnose dysautomia by ordering tests to prove thus? Such as tilt table etc..... Or will my blood pressure issues, and tachycardia being the norm for me -- be enough for him to make suggestions?

If there's a test that can show up in blood or urine that I'm hyperadrenergic - my doctor could maybe order it to help things along till my appt. at Mayo........that would not only r/o pheo but point to something else that's treatable.

Oh....I guess there's a rare window now to get yourself an appt. now at Mayo with Dr. Goodman -- they are just now getting their act together in finding out he's back and willing to take on patients with general neuro, neuromuscular, and dysautomia as well. There was confusion when I called and she found out there were a few appointments left in upcoming months....where it could take normally 6 mos. to a year to see him......If you are so inclined to go and see him -- I would bet now's your chance from what the scheduler told me. She herself told me he did not do dysautomia -- I challenged her with my information from here -- so she looked him and up and was shocked to see that he was indeed doing dysautonomia again.....in Scottsdale.

Thanks everyone..........Nowwhat!

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In the meantime I'll give a trial of no Flexeril....and cont. follow up with my primary care doc tomorrow and my pain guy. I feel anxious as regards this...........like -- should I see a Mayo cardiologist rather than a dysautomia specialist? Does anyone know what Dr. Goodman does at a new appt.? Will he diagnose dysautomia by ordering tests to prove thus? Such as tilt table etc..... Or will my blood pressure issues, and tachycardia being the norm for me -- be enough for him to make suggestions?

Sorry you are having such a rough go of it. I understand.

Note, Flexeril makes me tachy. I didn't mean to suggest that it has a favorable impact autonomically. Perhaps for some, as does Elavil, a tricyclic antidepressant.

Hang in there.

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  • 1 month later...

Hi NowWhat!

I'm new to this forum and searched Hypertension to find this post. Your story is almost exactly what I've gone through. Although I don't have any help for you, as I'm still getting the 'runaround' from all my doctors (I've seen 3 different Cardiologist, 1 Electrophysiologist, Rheumatologist, and Neurologist), I just wanted to let you know you are not alone. I'm 42, have hypertension and NeuroCardiogenic (orthostatic) Syncope. I've also just been diagnosed with a PFO. In 2006 I was diagnosed with Fifth's Disease, and I truly believe this has triggered so many issues for me including Rheumatoid Arthritis. I actually trained and ran my first 26.2 mile Marathon. I've never been a runner but set a goal to do this. This is where all my issues came to light. During training and exercising my blood pressure would lower to about 70/50. Everyone suggested taking in more salt and drinking more liquids. Nothing helped. In fact my 'ex-cardiologist' took me off my Ramipril and Hydrochlorothiazide. Slowly my BP started rising. And I'm very symptomatic with high BP. I get very bad headaches. I explained to my dr. that it was getting too high, and he said "well, just stay off the BP meds for a while...it won't kill you." That was when I knew I needed a new doctor. I have alot of other issues I don't have time to get into right now, but I did have the Tilt Table Test and flat-lined in only 7 minutes! My doctor said "so you have NCS, but the meds are worse for you than actually not taking them, so just watch for your symptoms and sit or lay down." I've seen too many doctors, spent waaaaay too much money and like you, don't know where to turn. If you have any other questions maybe we should compare everything we've done or learned. Read my signature to see all my issues and I wish you luck finding a doctor who can help. Oh, I also stopped seeing my Primary Doctor because she just wanted to put me on antidepressants! And like you, I have chronic back pain. Maybe if the doctors could tell us what's wrong we wouldn't be so depressed. Hang in there.

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cindibee,

I'm sure nowhat, will reply -- but she is at the Mayo this week. I think she is finding some answers. Waiting for her post of all the things done and explained. Maybe we all will benefit from what she finds out.

By the way, WELCOME to our group. It really is a knowledgeable bunch. Hoping to sort it all out and get solutions.

Issie

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Hi Cindeebee & welcome! I'm a newbie here too - & I'm glad you found these informative caring people on the forum! Issie's right - I'm getting testing done - last week and this week. Just found your post tonight - I would have written sooner but somehow didn't find this till now. You've got quite a story....don't give up though! You seem to have great common sense and great intuition in navigating the waters of clinicians that don't seem to provide advice that would be conducive to your best health - through your 'filter' .... Good for you! I learned that the discipline that takes care of crazy blood pressure is Nehprology. I am tomorrow going to have a 24 hour blood pressure monitoring study done...and somewhere in there is an appt. to see Nephrology as well. If I learn anything valuable I'll definitely post and let you know what was said. My monitor won't be done till hours after I see the doc - that's just how things worked out with Mayo scheduling - but maybe he'll help me just the same. I take Diovan and I guess that clouds ANS testing - but no one wants to take me off of it - because I do get pretty hypertensive. Because AZ is so hot these weeks I had to stop the dyazide diuretic because of how much I'm sweating. I also stopped the Bystolic because just before I arrive here I bottomed out with hr and bp. So again thanks for writing - I don't have any diagnosis yet at all.... I do wish you well - I get so aggravated at doctors passing out anti-depressants like candy for anything that they cannot handle....they should be the ones taking the dang pills for their discomfort - not the patient with complex symptoms...lol - hang in there - I'll do the same - and maybe you could see Nephrology if you haven't already? nowwhat!

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Thanks for your response issie and nowwhat!

I looked up Nephrology and it has to do with Kidney issues, which can affect blood pressure. I don't think I've ever had any issues with my kidneys though. But who knows. Doctors still really don't know why I have hypertension either, especially since I was diagnosed around age 36. My entire family has issues with hypertension, but none started as young as I was. Since I've met my medical insurance deductible for the year, I'm on a mission to try and get this all figured out... hopefully. :unsure:

Well, I just had a Sleep Study done this past Saturday, so I await anxiously for 5-8 days to get the results. If I have Central Apnea (no snoring) it could explain a lot. So I almost hope they find I have this. Isn't it sad we hope for confirmation of an illness, so we finally know what's wrong with us, so we can treat it correctly? =) I would think having dysautonomia would affect the way my autonomic system works while I'm sleeping as well. Makes sense really. And if it's not that, well my next doctor is my Gynecologist to check my hormone levels. I just need to find out why I'm extremely exhausted, even after sleep. I wake up with headaches/migraines, joint pain and the occasional night sweats. And when I look up all my symptoms online it points to a variety, of any number, of different illnesses... or quite possibly is it that I'm just getting older? :) I'm 42, still get carded when buying alcohol (that's really nice), but I feel like I'm 100 years old! Go figure. Oh and since we both share the Rare Hypertension WITH Hypotension issue - Don't you feel like the doctors should be more concerned for us since our blood pressures can be all over the place, all day and night. With those extremes, from high to low and back, I would think our hearts are working way too hard... maybe that's why I'm so dang tired all the time. Who knows. And I have had the 30 day Holter monitor as well, the only thing found was palpitations and some Tachycardia with exercise (my heart rate goes to about 205 - but my doctors aren't concerned at all with this!). Well, I'll update if I ever find anything else.

Love this forum. Thanks to everyone. Have a great day.

~ cindeebee

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Hi again ~

Well I saw nephrology - as a referral for the HTN - and my 24 hour b/p thing wasn't done till an hour after that consult - so I still await those results. The guy asked if I had ever had testing for 'why' I had HTN as no one in my family has it but me. I told him no aside from the cats and mets to rule out pheochromocytoma (neg). That's when he said that truly they can only ever figure out 2 to 3% of people's 'why's' to essential hypertension. So in any event he did order some other labs and urine testing - I seem to remember aldactone and some other terms used. Then he said for good measure he would do a CT scan or kidney ?arteriogram or some such thing to make sure the arteries are okay there. I'm to go back on Bystolic 2/5mg, take only 160mg of Diovan and the full Diovan daily....to help with the highs and maybe get rid of some of the lows? Whatever! I think he said he may swap out the dyazide with spironolactone instead - but I have no idea how I will know what he recommends - maybe the neuro will let me know. I'm so so tired .... of all of this and in general...but tonight is the sleep study - so maybe I'll sleep for a change! I was told that they've even been known to wake you up if you are having a lot of apnea - and put CPAP on you and begin titrating it for you personally - all before the study's done! Or possibly do a part two sleep study test on Friday if this one ilicits anything. I will check in again tomorrow or the next day to update ;-)

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I have apena too. They had me come back the following night. It took me forever to get used to the CPAP. I finally found comfortable head gear. It's the nasal pillow one by ......can't remember right now. If you need one later, ask me and I'll go look at it. I've tried 5 different head gears and this is the most comfortable and tolerable. If you tend to be a light sleeper or hard to go to sleep, ask for sleeping pills because they need you to sleep. Oh, just remembered the headgear -- Opus 360. Hope goes well and you get some answers tomorrow.

Issie

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