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Old 05-25-2014, 06:41 PM #1
litliwlowa litliwlowa is offline
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Join Date: Jul 2013
Posts: 21
10 yr Member
litliwlowa litliwlowa is offline
Junior Member
 
Join Date: Jul 2013
Posts: 21
10 yr Member
Default Clonidine question

I am at my wit's end. Back in late 2012, I developed Paroxysmal Hepertension.

I was finally sent to a vascular doc who upped my Clonidine to .3 mg AM, .2 mg afternoon and ,3 mg Bedtime - that was early 2013. And added Avapro 150 mg 2 x day.

I have no pleocrhomocytoma, and renal arteries were fine. My BP has been more than stable for several months, beginning with my rheumatologist AND endocrinologist ordering gluten-free diet.

I should add that the paroxysmal hypertension started 2 months after I sustained a very bad fall wherein my spine took all the force of the fall. A month after that, I developed chronic constipation. Later MRI's revealed aggravation of an incomplete cord injury at C7 and a bunch of other nasty stuff that threw me back into PT for C-spine and L-spine. Rest of spine was not MRI'd.

By trial and error, I figured out that as long as I can keep constipation at bay (gastro recommended basically what I call a "bowel program" - it works for me anyway), my blood pressure no longer spikes. But I am so over medicated on BP meds it basically goes so low I can't stay awake, Then an hour later I am jumpstarted awake with a how to say reflex coughing

Meanwhile all these months I am clearly over medicated on BP meds. I asked vascular about that and was basically dissed. He downgraded my diagnosis to benign hypertension and added GAD dx - for asking QUESTIONS?? No change in dose, no lowering of dose and suddenly my hypertension is BENIGN? Then why leave me so overmedicated??!!

Meanwhile, on my own I began a slow titration to .2 mg/.1mg/.2mg as not only was my HR dropping way way low (episodically as low as 37), my systolic was dropping below 100. Stayed at that dose roughly 6 weeks.

Meanwhile, after 5 years of too many "sleep certified docs" NOT getting it that MY BiPap was problematic and finally getting a loaner last year, they pulled unsupported by any studies fixed pressures of 12/8 out of the air so add in also central apneas and on average 2-3 hours of sleep a night.

The BiPap issue is FINALLY resolved as of two weeks ago with auto pressures (thus far looks to be averaging 10/6 - BIG difference from 12/8). As a result, my hypertension is substantially resolving and of course I am OVERMEDICATED.

I had to start titration down again, as not only were systolic AND dystolic were dropping way too low, my heart rate was elevating to compensate. Needless to say, lots of naps. This all came to a scary head last Thursday when I had an allergic reaction to a new med rx'd by my neuro for tremors. Then my BP AND heart rate were dropping WAY too low. Scary low. I actually have not driven since last Tuesday justin case.

It was worse on Friday AM, so I placed a call to my vascular doc's office at 8 AM when they opened as by now I have dropped the Avapro entirely and I am still having issues with systolic dropping to low 90's and at one point resting my HR was 109.

By end of day, I hear nothing back. So here I am flying in the blind - over a holiday weekend no less.

At present, I am down to .1 mg AM and .2 mg PM. BP today holding steady normal sweet actually, until about 4pm when it was up to systolic 147 (not bad really). But I am noticed increased irritability this evening.

Does anyone have any experience coming off this medication (Clonidine)?

I am appalled that vascular blew me off last December when I tried telling him I was OVER medicated and he said there was no way I could come off Clonidine. This is ridiculous!!

I also have Sjogrens Syndrome. My eyes are dry enough as it is, as is my mouth etc and teh side effect of this drug exacerbate that plus add in insomnia etc. It is a nasty drug.

I'm not necessarily asking advice, as I know only a doctor can advise me and thankfully my pharmacy at least confirmed I could drop the Avapro with no problem.

I just wonder if anyone has successfully been able to go off this medication successfully. I am on it only to treat hypertension. All because of an error a prior doctor made assuming that I was allergic to Avapro/HTCZ when in fact it was the HTCZ component I am allergic to. At that time I was post op total thyroidectomy like a couple of months so HR and BP were problematic until replacement hormones doses were sorted out.

So far, I have not experienced any rebound spikes thankfully. But at .2 mg in the evening, in the AM my systolic is averaging 97-99. But I'm a little iffy about dropping to .1 mg in the evening just yet.
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