need support

[musicmaker]

I posted here before several months ago and have really appreciated the info I have received previously.Things have gone to hell and I need to vent and maybe get some feedback.

I have had on and off moderate HBP for about 5 years(sometimes 170/95 but not for long). I tried every natural remedy in the book. I'm 57, take estrogen, not overweight, am very physically active, eat very well, have low stress life, etc. etc. etc.

In Jan, I began to have unpredictable episodic flushing in my ears and face. My ears would get red hot to the point of having to ice them! I was very uncomfortable. I was away at a friend's house when this began and when I got home, one night I took my BP during an "episode". 198/106. I went to urgent care....at that time I thought it was urgent.These episodes happened after I went to an internist to get some help and she put me on lotrel 5/10. IN urgent care we thought it might be Lotrel...went off...was given atenolol until I could see my reg doc. The flushing came back three days into atenolol. Doc says "it's not the lotrel" gives me 5/20. Again within about 3-4 days, a worse episode.....and I felt terrible. No headaches or dizziness or vision problems or anything. Off the lotrel. After two weeks the flushing stopped and i took nothing for about 1 1/2 months. I did however experience minimal flushing now and then but ignored it.

IN late april it started again and doc put me on toprol. My Bp at her office was 190/102. I wasn't even at the therapeutic dose of toprol (i was only up to 75mg) when i had a REALLy bad spell....227/110. Off to the ER.... It took 0.3mg of clonidine to bring it down. The doc then gave me a prescription fpr clonidine .1 2x a day. She sent me to a nehrologist...of course I had to wait 3 +weeks in all this misery. The clonidine and I do fine during the day but all my troubles start anywhere form 9PM onward . If I take enough clonidine to bring it down, I'm up until 3-4 AM since I can't sleep. My body is just racked with weird feelings. Oh how I wish I were one of the poeple who doesn't even know they have HBP!

Then the tests(mostly because i insisted....24 hr urine for pheo stuff, I actually did it twice trying to collect during and episode). MRA checking for renal artery obstruction. Plasma catecholamine or epineprhine? and some plasma tests for adenosterone?.....can't remember. All negative.

The new specialist put me on Labetalol and said to cut back on the clonidine over 6 days. By day 4, I woke up feeling like I was dying with really bad aches all over. I had read from several sources that labetalol has been known to rarely cause liver problems and if you have flu like symptoms to let your doc know. I had to inform him of this! he took me off the labetalol and said just do the clonindine until you get back from your trip and I get back from mine. Then we'll start over. He also had some blood taken to check for muscle inflammation and liver functions(my request). Both completely normal.Well...I can't go on my trip because the nightime terrors happen every other day or so,

That's the other weird thing...no matter what drug I'm on with the clonidine, alone or in conjuction, all of this seems to have an every other night pattern.

Well, enough ranting....I am feeling extremely hopeless, crying a lot, luckily getting a lot of support form my wonderful husband. I feel like my life is about over. I have had to cancel any activity after 6PM because of the unpredictablility.

I did get some ambien form my gp to help me get a little sleep now and then. The specialist sent me back to my internist for this...his office says they don't prescribe pain pills or sleeping pills. Weird. I HATE all of this...I have never had to take a pill in my life and here I am a total mess. AND I am getting the distinct feeling that the doc think I am a hypochondriac because I present with so many symptoms with the HBP and this is SO uncommon. AND I do a lot of research and ask a lot of questions. I don't see any use in looking for anothe doc. It's just a drug game now.

Well...thanks for being here for me to rant.

I would appreciate any and all input. My next appt isn't until June 8 and between the clonidine and the ambien I guess I'll survive.


Forgive the errors ....I'm feeling the clonidine sedation from my 2"oclock

Cheers....I wish
Anni

[zuzu8]

Originally Posted by musicmaker

Then the tests(mostly because i insisted....24 hr urine for pheo stuff, I actually did it twice trying to collect during and episode). MRA checking for renal artery obstruction. Plasma catecholamine or epineprhine? and some plasma tests for adenosterone?.....can't remember. All negative.

Anni

Anni,

Seems like the nephrologist investigated pretty thoroughly the possibility of a pheo, but I don't think the plasma catecholamine/epinephrine tests you had are the same thing as a Free Test for Plasma Metanephrines. Do you know if you had that test?
This article will tell you more, and concludes that tests for plasma metanephrines are more sensitive than tests for plasma catecholamines or urinary metanephrines for the diagnosis of pheochromocytoma.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u ids=7778821&dopt=Abstract

(The Boards no longer parse URL links automatically, so you'll have to copy and paste the link into your address bar).


I also read an article somewhere a while ago by a Dr. Graeme Eisenhofer, who is Director of the Clinical Neurochemistry Laboratory at NIH, who concurs that the test for plasma metanephrines is a much more specific test for pheochromocytoma. It can be very useful in identifying pheos which are less active, and therefore difficult to diagnose.
As for the 24 hour urine tests...they are not always successful at picking up intermittently secreting tumors.

Just a thought.

zuzu xx

[jtu91952]

Originally Posted by musicmaker

I posted here before several months ago and have really appreciated the info I have received previously.Things have gone to hell and I need to vent and maybe get some feedback.

I have had on and off moderate HBP for about 5 years(sometimes 170/95 but not for long). I tried every natural remedy in the book. I'm 57, take estrogen, not overweight, am very physically active, eat very well, have low stress life, etc. etc. etc.

In Jan, I began to have unpredictable episodic flushing in my ears and face. My ears would get red hot to the point of having to ice them! I was very uncomfortable. I was away at a friend's house when this began and when I got home, one night I took my BP during an "episode". 198/106. I went to urgent care....at that time I thought it was urgent.These episodes happened after I went to an internist to get some help and she put me on lotrel 5/10. IN urgent care we thought it might be Lotrel...went off...was given atenolol until I could see my reg doc. The flushing came back three days into atenolol. Doc says "it's not the lotrel" gives me 5/20. Again within about 3-4 days, a worse episode.....and I felt terrible. No headaches or dizziness or vision problems or anything. Off the lotrel. After two weeks the flushing stopped and i took nothing for about 1 1/2 months. I did however experience minimal flushing now and then but ignored it.

IN late april it started again and doc put me on toprol. My Bp at her office was 190/102. I wasn't even at the therapeutic dose of toprol (i was only up to 75mg) when i had a REALLy bad spell....227/110. Off to the ER.... It took 0.3mg of clonidine to bring it down. The doc then gave me a prescription fpr clonidine .1 2x a day. She sent me to a nehrologist...of course I had to wait 3 +weeks in all this misery. The clonidine and I do fine during the day but all my troubles start anywhere form 9PM onward . If I take enough clonidine to bring it down, I'm up until 3-4 AM since I can't sleep. My body is just racked with weird feelings. Oh how I wish I were one of the poeple who doesn't even know they have HBP!

Then the tests(mostly because i insisted....24 hr urine for pheo stuff, I actually did it twice trying to collect during and episode). MRA checking for renal artery obstruction. Plasma catecholamine or epineprhine? and some plasma tests for adenosterone?.....can't remember. All negative.

The new specialist put me on Labetalol and said to cut back on the clonidine over 6 days. By day 4, I woke up feeling like I was dying with really bad aches all over. I had read from several sources that labetalol has been known to rarely cause liver problems and if you have flu like symptoms to let your doc know. I had to inform him of this! he took me off the labetalol and said just do the clonindine until you get back from your trip and I get back from mine. Then we'll start over. He also had some blood taken to check for muscle inflammation and liver functions(my request). Both completely normal.Well...I can't go on my trip because the nightime terrors happen every other day or so,

That's the other weird thing...no matter what drug I'm on with the clonidine, alone or in conjuction, all of this seems to have an every other night pattern.

Well, enough ranting....I am feeling extremely hopeless, crying a lot, luckily getting a lot of support form my wonderful husband. I feel like my life is about over. I have had to cancel any activity after 6PM because of the unpredictablility.

I did get some ambien form my gp to help me get a little sleep now and then. The specialist sent me back to my internist for this...his office says they don't prescribe pain pills or sleeping pills. Weird. I HATE all of this...I have never had to take a pill in my life and here I am a total mess. AND I am getting the distinct feeling that the doc think I am a hypochondriac because I present with so many symptoms with the HBP and this is SO uncommon. AND I do a lot of research and ask a lot of questions. I don't see any use in looking for anothe doc. It's just a drug game now.

Well...thanks for being here for me to rant.

I would appreciate any and all input. My next appt isn't until June 8 and between the clonidine and the ambien I guess I'll survive.


Forgive the errors ....I'm feeling the clonidine sedation from my 2"oclock

Cheers....I wish
Anni

I really feel for you. I've been there and done all those things. Todate, I've still not gotten any answers, but I am learning to live with it. I usually get alot more help from this board than I do from all my drs combined. My drs either tell me to quit reading or its not the meds. Why is it that i always feel better after stopping the meds. I really need to continue my bp meds due to my high numbers and diabetes. I was told it was ok to take tylenol pm to relieve itching and no sleep. If you find something that works, please post it on this board, I too can use help in the are. Thank God I don't work because I would be late everyday, usual bedtime is afer 3am.

[musicmaker]

This is a followup to my previous "need support" email.Things have gotten a tad better and I'm off to the doc today. I have been taking .1 clonidine 7AM, 3PM and 10-11PM . Some days I feel almost completely normal, other days I still have some flushing and trouble sleeping. My HBP is ALWAYS between 8PM-4 AM. The opposite of most people!

In the beginning the flushes were the sign of blood pressure spiking but now I've had some at low BP (125/77). It's a roller coaster fer sure.

This morning I woke up with 133/77, took a clonidine and of course, crashed a 1/2 hr. later. It's 10 AM and I'm still a bit woozy...Bp 125/70. Buut if I don't take one in AM I pay later.

SO far, all tests of secondary causes are negative...so.. only thing to do is keep on testing meds.

Someone correct me if I'm wrong:

1. I don't want to go on a beta blocker for two reasons....I want to get off clonidine and I understand if you take clonidine with BB you must come off BB first! SO, what would the point be? Also, I exercise and am very active.

2. Don't want Calcium Channel blocker since previous attempt with lotrel was when the flushing first started and I still associate that with CCB. I know that's NOT the reason since it happend also when I was off of them but JUST IN CASE the CCB started something weird and unknown I don't want to risk it.

My question today will be....How will I take one or two drugs more with the clonidine when my pulse already is typically in the low to mid 50's and gradually get off clonidine? Also the other drugs will take at least 2 weeks to be effective, right? Does anyone have any experiental info about using clonidine with other drugs.

Anyway...I am better and have some pretty good days so I'm hoping and praying.

I think I will ask to try ARBS. Sounds good

Cheers
Anni

[CASSIEBEL]

Hi Anni, I certainly hope you find answers to your symptoms. I have taken clonidine .1 x 2 a day, on and off for the last 6 mos. I also took it on a regular basis 2 different times, years ago. It is a great drug to help get the pressure down in a hurry but as you know, it has that sleepy effect and is difficult to live with on a regular basis.

I take Atenolol (beta Blocker) on a regular basis. Never had a problem tapering off Clonidine. I didn't know they were a problem together. In fact I just quit taking Clonidine last week. Still taking Atenolol. What kind of a problem does quiting Clonidine before beta blocker supposed to cause.

I do have HBP that is rather hard to control and I have taken most all types of BP meds including Beta Blockers, ACE Inhibitors, CCBs, and ARBs. I took the Clonidine with all of these, but like I said not on a reg basis. The ARBs have the fewest side effects (by far) Maybe you could ask your Dr. about these. AS far as CCBs go I had flushing and rapid heartbeat with Norvasc & Phlendil but not with Diltiazem & Verapamil. But then everyone reacts differently. I have never heard of anyone who had a reaction to an ARB though. Also they don't slow your pulse down.

You should be able to start a new drug and continue to take Clonidine till you can taper off without slowing your pulse anymore ( be sure Dr knows it's already slow.)

Gee, I feel bad for you. I hope you get some help soon. HBP is hard enough without these weird problems, HUH?

Cassiebel