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Old 02-23-2010, 11:20 AM   #1
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Lupus and blood pressure spikes when sleeping.

I have Lupus and have been sick for over two months now with adrenaline- like surges that make my blood pressure spike as high as 170/100, and the doctors are stumped. At first, the surges began in the evening, with pounding heartbeat, shakiness, breaking out in sweat, anxious feeling, and the need to have a bowel movement. Sometimes this would continue until I had fully evacuated my bowel, waking me again and again for up to four hours, and then would subside. Then, the frequency continued until these surges were almost constant. I lost my appetite, could barely eat due to nausea (no vomiting), began losing weight, diarrhea.

My internist first considered hyperthyroidism. I was already taking Atenolol (beta blocker) for many years for intermittent palpitations from mitral valve prolapse and migraines, so he increased my dosage to twice a day to help with the symptoms. I felt better within an hour of increasing the dose, but that didn't last. I checked my blood pressure with a home machine because of the increase in beta blocker and found my blood pressure was elevated off and on throughout the day. Thyroid blood tests were normal, but my thyroid scan showed increased uptake at the 24 hour interval. Was assured by endocrinologist that scan was normal.

The Endocrinologist ordered a plasma and urine catecholamine levels checking for pheochromocytoma that were normal. I was started on an alpha blocker (Doxazosin) for the hypertension which spiked up to 171/ 93, 160/ 103. My blood pressure was maintained at or below 140/80 during the day but continued to spike at night, waking me each time I was at the beginning of a dream (possibly REM sleep) with a surge, causing my heart to pound, etc. My blood pressure was 150-160/ 90's just after these episodes. Every hour to hour and a half, I wake with these surges, just as I begin or in middle of dreaming. I take my blood pressure to make sure it doesn't get too high. If it is really high, I get up and walk around, and that seems to lower it. Cortisol and ACTH levels checked for Adrenal Insufficiency were also normal. Endo doc gave up on me since the diagnosis was not an easy find.

Internist ordered 5-1AA test for hormone secreting carcinoid tumor and results were normal. Began to wake to chilling when blood pressure rising with facial and neck flushing and breaking out in sweat when blood pressure lowering. After taking the alpha and beta blocking antihypertensive combination, my appetite improved some, and an over the counter 24 acid reducer was taken for indigestion. After eating, diarrhea changed to constipation and now is normal. Total loss of weight so far twenty pounds.

I have a long history of chronic illness which may or may not be relevant. Systemic Lupus, Fibromyalgia, Chronic fatigue, Irritable bowel, GERD, osteopenia, spontaneous rib fractures, brain stem stroke (ischemic of unknown cause). Had no history of hypertension except after stroke which resolved. I have never smoked, do not drink, and had been riding my bicycle 10 mi. a day, five days a week. I did have a bout of flu- like symptoms, the H1N1 vaccine, and an upper respiratory infection, sinusitis just prior to symptoms getting worse. Also was taking 2 pseudophedrine tabs for sinus congestion and drinking caffeinated beverages. (Stopped when symptoms started). Other significant history: Took 2 year course of Forteo (Parathyroid hormone) for repeated rib fractures supposedly due to long term use of Prednisone for lupus. After quitting Forteo injections, lost 45 pounds. History of mild ankle swelling that developed after stroke which responded well to taking diuretic and potassium replacement. (Quit taking when became somewhat dehydrated with nausea. My ankles have not begun to swell again. My sed rate is 11, the lowest it has ever been since I have been diagnosed. I stopped taking Plaquenil which I have taken twice a day on and off for over thirty years to see if it helped my stomach or was the cause of my symptoms. My sister and mother both have hypertension and are on medication.

Internist sent me to gastroenterologist. I had a previous colonoscopy which had a very small polyp which was removed but too small to biopsy about 4 years ago. Was supposed to get another colonoscopy, but became ill. He said he would do work up after other issues addressed. CT scan of abd. showed 9 mm lung nodule, most likely post infectious, (suggests to repeat in 3-6 mo.) spleen cyst, and no other abnormalities.

Other significant (?) things: Turned in bed and thought I had fractured another rib. Xray did not show fracture. Continue to have pain to right lower rib area still after several months. Keeping underwire bra off helps some. Continue to have a hyper-startle to loud noises such as telephone, television volume, etc. Had one episode similar to this 6 years ago when recovering in the hospital from a hysterectomy and ovarian cyst removal. (Possibly due to decreased estrogen level?) Now, years later, I am 50 and had my estrogen levels checked because of mood swings. Estrogen low. Also quit taking Lexapro which I had been taking for fibromyalgia (which is in remission) and mood swings when given high doses of Prednisone when my lupus flared and after my brain stem stroke.

Now, while taking alpha and beta blockers, typically my blood pressure is normal or slightly hypotensive during the day, most likely to being more active and up walking. My husband has to drive me to doctor appointments which are over two hours away. I have given up on having enough energy to prepare meals and stick to trying to fold a few clothes, and wash dishes. The alpha blocker makes me dizzy and cloudy headed. I can't concentrate very well. My blood pressure continues to spike almost exclusively at night and the surges wake me every hour or so in the middle or beginning of a dream, sometimes with brief burning pain to my chest. Increasing my beta blocker at night has helped with the intensity some. My blood pressure usually recedes to normal after each surge if I get up and walk. As you can tell, I am becoming sleep deprived, and am not sure how long I can take this. I fear my fibromyalgia or lupus will become active again or that I could have another stroke. Occasionally have a better night in which bp only goes up to 140/90, but still wake with surges, although are less intense. Have found that BP is high when lying down, lower sitting, even lower standing, and low kneeling. (Possibly due to antihypertensives). My blood pressure even improves when I sit up straighter. I often wonder if there is some tumor or blood vessel that is stimulated or crimped when I try to sleep. I have been sleeping with my head propped very high. (At first it was because I was taking medication at night and I have GERD and was wanting to help keep everything down) Now, I am thinking it is helping keep my blood pressure from getting too high because when I laid down, my bp had surged up to 165/100. I know the hormone/ adrenaline- like surges are causing me to be anxious and insomnia is affecting my thinking. I have become obsessive about checking my blood pressure whenever I feel a little strange.

I am sorry that this is so long, but I want to give all my symptoms and somewhat complicated history to see if anyone can relate. The next step is to get a 24 hour halter monitor and pulse oximetry. My doctor was hoping to find some abnormal lab test so that he would know what department to send me to a tertiary care center such as UCLA or USC.

I think I have all the symptoms of pheochromocytoma (an adrenal tumor) without any of the lab results or scans to prove it. Have read up on pseudopheochromocytoma boards that discuss anxiety and sleep apnea as possible differentials of diagnosis. (I have snored all my life, but don't suspect sleep apnea, and any anxiety seems to be related to the adrenaline- like surges). Dr. gave me a prescription for low dose Xanax when symptoms were really intense. It helps but makes me sleepy and unsteady. Once I got on a better routine with the antihypertensives, the anxiety improved, but this is only taking care of the symptoms, not the cause. The only real problem during the day is making sure that my bp doesn't bottom out when I get more active.

This is very frustrating for me and my family. My niece who is a nurse practioner says that I should see my rheumatologist, even though my Lupus has been quiessant for many years. Anyone who has any ideas is welcome to remark. Even some encouragement would be of help. Thank you in advance. I also posted on the high blood pressure board.

 
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Old 02-23-2010, 05:55 PM   #2
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Re: Lupus and blood pressure spikes when sleeping.

Wow Sunset....I won't complain again. I don't see any mention of a cardiologist. If I were having blood pressure issues like you do my first telephone call would be to my cardiologist.

I also suggest you go to a comprehensive medical/research center for a complete work up. If you live near LA you have several choices. You know Daniel Wallace (the lupus guru) is in LA....at UCLA I think?

Good luck to you.

 
Old 02-24-2010, 10:06 AM   #3
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Re: Lupus and blood pressure spikes when sleeping.

Thank you for replying, Heidiclouser. I have a cardiologist appt. coming up and they are hooking me up to a halter monitor today with a pulse oximeter. You would have thought that they would have hooked me up to an EKG machine at the ER when I visited them on New Years day. I wasn't having palpitations at the time, and I guess wasn't thinking clearly. During the three hours of waiting, I was concentrating on getting down some gatorade so that I would be hydrated and wouldn't have to get an IV.
My internist says that if the halter monitor shows any abnormalities he will have me fast tracked to a sooner cardiologist appt.

Actually, Dr. Wallace was my rheumatologist before I moved two more hours north (three years ago). I guess I should make an appt. to see him. Unfortunately, he is four hours plus away from where I live now.

Does anyone know of a good caliper Rheumatologist in the Fresno area (one hour plus away)? I live two hours away from my Internist, and traveling has been hard on me. Thank you so much for your suggestions. It helps a lot just to have some feedback.

 
Old 02-24-2010, 10:10 AM   #4
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Re: Lupus and blood pressure spikes when sleeping.

Another thought. I suppose if I do go to a University Hospital, it would be down south in the LA area, so having Dr. Wallace for this problem would be the smart thing to have. Is he affiliated with Cedars- Sinai? I know his office and lupus research center is just across the street.

 
Old 02-24-2010, 11:31 AM   #5
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Re: Lupus and blood pressure spikes when sleeping.

Sunsetnan, hi. I felt bad reading your post---a lot on your plate.

Obviously I'm just a patient, so here are some "patient-only thoughts". Have you read about drug-induced lupus (DILE)? I'm sure I've read that certain heart & BP meds can be culprits, and certain cholesterol meds, too (among others). I really wonder if the odds for DILE-like reactions from certain meds are greater in people who already have SLE?

Very glad to read you're on the heart monitor & will see a cardiologist soon!

Since you stopped taking Plaquenil, do you take anything for the lupus? Keep up with regular rheumatology appts?

My mom took Coumadin for many years, yet her drs. (small town) never named it antiphospholipid syndrome. She also had heart problems & dramatic BP fluctuations that sound a little similar. Turns out she had a subarachnoid brain aneurysm, which wasn't caught in time.

I hope you post updates when you can. Meanwhile, GOOD LUCK with your upcoming appt. Wishing you better days ahead, sincerely, Vee

 
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Old 02-24-2010, 03:15 PM   #6
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Re: Lupus and blood pressure spikes when sleeping.

Yes I think Wallace is still with Cedars-Sinai. I think it might make sense to make the trip and see him again and then ask him for a referral to someone closer to where you live.

 
Old 02-25-2010, 10:55 AM   #7
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Re: Lupus and blood pressure spikes when sleeping.

Vee, Thanks for commenting. The only time I have had problems with my blood pressure was when I was in the hospital after my brain stem stroke. My blood pressure eventually returned to normal by the time I left (10 days). I was on Tenormin 25mg for migraine prevention and occasional heart palpitations from mitral valve prolapse for the last 6 years, not for hypertension when all this started. I have had Lupus symptoms since I was 10 years old, and diagnosed with it for the last twenty- five. I take Aggrenox (similar to Plavix) and ASA for stroke prevention. I was put on high doses of Prednisone when I was in the hospital and eventually tapered off and my Lupus has been very quiet since. I was not taking any new medications when I came down with these symptoms. I was sick with the flu, recovered, got an H1N1 vaccine (non- active), and then got sick with an upper respiratory infection just before all this got worse. I had tapered off of Lexapro the year prior to this.
Believe me, my doctor and I have looked into all the medications I take, and any interactions as a possible cause. (I even stopped using my sonic toothbrush wondering if it was jiggling my head too much. lol.) I suppose another idea prompted by your reply is to see my neurologist again. She told me I only needed to go back to her if I started having problems. I don't know if these problems are in her area of expertise, but we've looked everywhere but above the neck, so far.
I have not seen a rheumatologist in the past three and a half years because I moved and had been too busy to find a closer one. My internist had been monitoring my labs, and my Lupus had been quiet. (I know, not a good enuf excuse).
I have found similar but older posts on other message boards with a lot of the same symptoms, but no one seems to post whatever happened to them and what worked or what they found as the cause. I will see a second opinion doctor tomorrow. Hope he has some insight. Thanks for your input.

 
Old 02-26-2010, 06:32 PM   #8
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Re: Lupus and blood pressure spikes when sleeping.

Sunset- Please share more of your symptoms. Have you ever had low potassium or sodium??? i am going through very similar issues and would love to hear about more of your symptoms. I have been in er 4 time s admitted twice for tachcardia and high bp. I am being worked up now for adrenal umor. I am freaking. Hope to hear from you. Kw

 
Old 02-26-2010, 09:21 PM   #9
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Re: Lupus and blood pressure spikes when sleeping.

kw123: The only time I had a low potassium was when I had my blood drawn in the ER and was having diarrhea, and it was just out of the low normal range. My labs since have been normal, and I haven't had anymore diarrhea.
I just saw a specialist today and he took 13 vials of blood and gave me a thorough physical exam and history. He wants me to stop my Aggrenox as it's side effects are similar to some of my symptoms. He ordered a lot of lupus tests, coagulant tests, checking vitamin and mineral levels for my osteopenia, and a sleep study. He made mention of endocrine/ hormonal disorders, brain damage/ atrophy from my stroke, anxiety, and seizures as possible causes and even suggested that I may have to live with just controlling the symptoms and no cure.
I was very impressed with his frankness and thoroughness. I will see a cardiologist next week and will find out the result of the halter monitor and pulse oximetry.
You asked about my symptoms. I have posted on the high blood pressure board in detail if you care to read. I continue to wake up approx. every hour with adrenaline- like surges of varying intensity accompanied by a spike in blood pressure up to 150/99, often 8- 10 a night. The Atenolol seems to have decreased the intensity so that I don't feel the hot burning pain I once had, and the latest BP's have not have been as high (or I'm not checking my bp quick enough to catch the peak). Will know more when I have my sleep study and they can actually document what is happening for the doctors. My doctor was joking with my husband (who also has medical issues and sees him) that he thought my husband was complicated!
Its sad to know that so many people are suffering with similar symptoms, but it is comforting to know that you are not alone. Best wishes, kw123. I will continue to update in hopes it helps someone. It certainly helps me to vent.

Last edited by Sunsetnan; 02-26-2010 at 09:22 PM. Reason: typo

 
Old 02-27-2010, 08:54 AM   #10
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Re: Lupus and blood pressure spikes when sleeping.

Sunsetnan, I'm glad to see you were examined & dr. ordered thorough tests. We'll watch for updates. Meanwhile, sending more good wishes your way, Vee

 
Old 03-04-2010, 11:24 AM   #11
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Re: Lupus and blood pressure spikes when sleeping.

Hi there sorry to hear all your going through .I couldn't believe it alot of the the test and symptoms are the same .I have been to the doctor for 2 years and still just treating syptoms and not finding underlying roots.Iam been experiencing blood pressure high nite with low during daytimes.Sometimes i have been driving and experienced the surge of adrenaline and get all the flight feelings.I have been check for almost all the test have you have .one day ago they did a ekg and it show different then last time .But i too am frustrated and feeling lost as what to do.Let me know if any help comes your way.Iam on beta blocker and alph 2.

 
Old 03-05-2010, 11:41 AM   #12
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Re: Lupus and blood pressure spikes when sleeping.

jhileman2: It is so good to find a kindred spirit, but bad that you are suffering. What alpha and beta blockers are you taking and the dosage? I know that our medical history, circumstances, and bodies are different, but there are some things that I have found out that help me, and I'm hoping we can help each other.
No matter what my doctors say, my main goal is to make myself as comfortable as possible, and keeping my body healthy and from harm until a cause and curative treatment is found, or it miraculously goes away. (I vote for that one!) If a cure and treatment is not possible, I guess I'll have to live with the first goal.
Because my doctors have given me a little bit of latitude in adjusting my dosages, I have found a combination that, although not without side effects, has actually helped. I take 1/4 of a tab of Doxazosin (or 0.5mg alpha) and 1/2 tab Atenolol (12.5mg beta) in the morning. I have found that I must take them at least 2 hours apart, with the Dox. taken first. My reasoning is that the Dox. first needs to decrease the adrenaline level before the Atenolol can be given, otherwise I find it makes my bp's actually spike higher. This is based on the theory that was advised on the pheochromocytoma (adrenal tumor) websites. Whether or not I have an undiagnosed hormone- secreting tumor, the same theory seems to apply with what I think are adrenaline surges. Have you found any of this medication timeframe to be true for you? I take 1/2 tab Dox. (1mg) at night (three hours prior to bedtime) and 1 tab Atenolol (25mg) at least two hours later. This seems to have the medications peak at the times that I need them for the high night spikes.
I am happy to report that my blood pressure spikes have been decreasing in frequency for both day and night. (Thank you, Lord!). I still have adrenaline surges that wake me almost every hour at night, but my blood pressures have been consistently lower and my cardiologist practically laughed (well, he did laugh) at the numbers. I explained that it took a lot of work to get the blood pressures manageable. I can't complain about 130's and 140's over 80's and 90's. Every once in a while, I'll spike to 150/ 99, but that is few and far between. The cardiologist said that bp's under 160 used to not even be considered hypertension (imagine smug look on his face). He also said that my numbers were too low for a pheo. He said they would be up in the 200's. When I was first being treated, I made sure my bp didn't get too high, by increasing dosage and even walking around in the middle of the night to get it down (while on an alpha blocker, standing up and walking around seems to accentuate the postural hypotension and I used that to my advantage). Have you found this to be true? My bp never got higher than 170's over 100's, but I worked hard to keep it that way. I wouldn't get back in bed until my bp was down to the 130's. Now, I seem to be on a manageable regimen.
OK...don't laugh, but I sleep with my head elevated on three pillows in an almost seated position. At first, it was because I was taking medications in the middle of the night and wanted the pills to stay down (I was nauseated and have GERD). I also noticed that the intense adrenaline- like surges were more easily tolerated when my head was elevated than when I was lying flat (barely). The alpha blocker dilates the blood vessels and causes my nose to be stuffy, and I have a few lung issues, so elevating also helped. I also bought some of those adhesive strips that help keep my nose open (can't take any decongestants- that would really get my heart going). I also keep a light on in the closet so that I can see my blood pressure readings on the machine. It also helps orient me when I am startled awake with the surges. (Increasing the atenolol at night has greatly helped with the hot searing pain they used to cause me.) I do snore, and if sleep apnea is complicating this, I figured sleeping upright would help.
I know, this all sounds like a lot of work, but after several months, I have it down to a science, and my husband has never laughed at any of this. (Bless his heart) A person's got to do what a person's got to do to live with this. But, like I said, I'm improving, so I must be doing something right, huh?
I take a lowered dose of everything during the day to help minimize the side effects of the medication so that I can function (that means walking erect). I still have times during the day where I can't read or concentrate. I feel as if I am walking with blinders on. I still have breakthrough anxiety, shakiness, and dizziness. (Can't drive). Sometimes, I wonder if some of it is medication rebound because of the lowered dose. What have you found that works for you? Do you have the same side effects?
My next appt with my doctor is next week. I still have a sleep study to do, and my 2nd opinion doc will go over my latest lab work. I wonder if my improvement is because he told me to quit taking my Aggrenox and just take baby aspirin (for stroke prevention). The Aggrenox is a persantine and aspirin combination medication and side effects can be similar to my symptoms. I can say that I am improved, whether due to that or not.
Unless I get dramatically better, my next trip will be to UCLA. Who knows when I'll get an appointment? Here's hoping for better days for all of us. Please reply soon.

 
Old 03-05-2010, 11:42 AM   #13
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Re: Lupus and blood pressure spikes when sleeping.

One other question. I just turned fifty this year, have one ovary, and most likely in early menopause (Had hysterectomy) I have read posts on the menopause board who have some similar symptoms. My sister knows someone with similar symptoms, albeit much less intense, who claims her problems are from menopause. I do get chilling and sweating, but of course, all hormone- secreting problems have that as a symptom. Could menopause be complicating this? I don't know your age or medical history, Lupus, menopause, etc. I did have something similar (adrenaline- surge episode) occur not long after I had a large cyst removed on my ovary. It lasted about an hour or so. Not ruling out anything.

Last edited by Sunsetnan; 03-05-2010 at 12:04 PM. Reason: correction

 
Old 03-06-2010, 06:02 AM   #14
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Re: Lupus and blood pressure spikes when sleeping.

THE DOC HAS ME ON CLONIDINE .1 WHEN EVER B/P GET HIGHER . hE JUST ORDERED
TROPROL XL YESTERDAY ONE TIME A DAY NOT TIME SPECIFIC.i TEND TO FEEL LIKE
YOU EVENINGS WOULD BE BETTER to take it /.I HAVE BEEN HAVING SURGES AT NO
SPECIFIC TIMES,EXCEPT SOMETIMES IN CAR when traveling at higher speeds on
freeway.feels like my head becomes slightly dIZZy or light headed .tHEY
GIVE ME XANAX TO TAKE WHEN TRAVELING TOO.THEY HAVE GIVE ME ALL THE TEST
THAT MOST YOU TALKED ABOUT, I HAVE ALREADY DONE SLEEP TEST 2 YRS AGO SAID
I ELEVATED B/P BECAUSE I STOP BREATHING SEVEREAL TIME S IN 15 MINUTE
PERIOD. DONT ALWAYS WEAR CPAP IT IS SO ANNOYING TO WEAR.i ALSO SLEEP WITH
ELEVATED BED. B/P NUMBERS HAVE BEEN RUNNING 180 OR 190 / 107 EVENING OR
NITE TIME AND WHEN I FIRST WAKE UP . THEN GOES DOWN IN MORNING.

I DID HAVE hysterectomy 1995 FIRST TO REMOVE UTERUS 97 REMOVED BOTH
OVARIES I HAVE BEEN THE ROUTE WITH HORMONES AND CANT TAKE MUCH OF ANYTHING
SYNTHTEC MIGRAINES FROM ESTROGEN.I HAVE FOUND BIO- IDENTICAL HORMONE
THERAPIST AND SEEM TO BE DOING FAIRLY GOOD BUT HAVE NOTICE THAT TO MUCH
HORMONE IS JUST AS BAD AS NOT ENOUGH .I NOTICE B/P UP AFTER SURGERY AND
ALSO CLOSESTEROL IN 316.
IAM DOING WHAT BOTH DOCTORS HAVE SAID BUT I FEEL I NEED TO FIND SOME
SPECIALISTS THAT KNOWS MORE SPECIFICS CONCERNING THIS ADRENALINE STUFF.
ALSO FOUND SUCH WEIGHT GAin after these surgerys.

 
Old 03-06-2010, 06:13 AM   #15
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Re: Lupus and blood pressure spikes when sleeping.

hey i forgot to tell you also that the bio- identical hormone therapists checks my hormones every 3 mths nad they found that the cortisal level are extreme high in the in evening early morning .when we are suppost to be leveling off to go to sleep but the blood tests cannot detect this as well as the salva tests

 
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