Help - Clonidine, Hyperpots And Raynauds?

[~elizabeth~]

I'm really at my wit's end and wondered if anyone can help me work out what's going on?

My problems started 2 years ago. The first signs were a prickling, numb pain around the eyes which no one could get to the bottom of, plus numbness in the mouth and white, prickling tongue. Then a few months later I had what I thought was an extended bout of flu, shivering/sweating/diarrhoea and tachycardia, followed by uncontrollable flushing, which has not ceased for 2 years (not MCAD before anyone suggests it). A feature of the flushing from the start is that it's always been worse sitting or supine.

Eventually I saw a dermatologist who put me on clonidine, which helped a bit. However, I was still having He later added atenolol, which seemed to make things go downhill again, so I stopped. He tried labetalol instead, which didn't help either. At this point I worked out my pulse was increasing on standing and that I probably had POTS, and sought help for that instead. The first suggestion I had from the POTS specialist was to increase clonidine. I have a feeling he thought I might have hyperadrenergic POTS, but increasing the clonidine didn't help at all. A year later I'm still waiting for tests and to see him again.

In the meantime, the initial improvement I saw with clonidine has seemed to ebb away. Last October, my face discomfort and flushing took a sudden, serious turn for the worse. My ears started flushing as well, and I developed a painful sore that stubbornly refuses to heal. My GP suggested trying nortripytline for the burning face pain. This actually made the facial flushing worse, esp while sitting, and extended the burning pain to my nose, brow and inside mouth and nose, as well as raising my BP a lot. I It was clear that this drug was raising my norepinephrine levels, in turn causing vasoconstriction, and both these things were making the face pain worse.It dawned on me then that the sore on my ear might be a Raynaud's ulcer, given that the worsening of these symptoms started with colder weather. I assumed that the problem was an interaction between the clonidine and the nortripytline, came off the latter and tried starting propranolol to see if this helped. The problem was repeated again, a worsening of the face prickling sensations and a rise in blood pressure, plus an increase in waking up with burning, swollen face in the middle of the night.

I had to come off BP meds a few weeks back for a cardiac stress test. At that point I decided to come off the clonidine completely to see what happened. I've gradually been reducing it over the last month, and have been off it completely for about a week. I've had terrible problems with withdrawal, my BP shot up to 146/100, I've been bathed in sweat, shaking, flushing with high body temperature, very similar to the symptoms that occurred when the problems started 2 years ago. Taking 80mcg of Propranolol didn't really seem to help lower the BP very much, and what I now think is probably facial Raynaud's has been pretty bad too. I think the withdrawal symptoms are finally decreasing, BP has been 100-114 systolic for the last 2-3 days, but body temperature is still raised and the Raynaud's symptoms still very bad.

What I want to know is at what point can I be sure that the clonidine withdrawal symptoms have stopped, and assess whether I'm still having 'hyperadrenergic' symptoms. Also, what can be done if I am, as clearly the clonidine wasn't helping this much, and appears to have been making the Raynaud's type symptoms worse over time (certainly I've become a lot more sensitive to cold since I started taking it).

I feel I should really be getting some help with this from the medical fraternity, but my GP has no clue and apart from having tests I haven't really seen anyone yet. I've been told that the tests done so far show I definitely have POTS, that I have an imbalance of sympathetic/parasympathetic (whatever that means) but I still have no idea when I will actually see a neurologist about what's going on. No measurement has actually been made of plasma norepinephrine levels (another reason why I felt I needed to come off clonidine as I'm sure it would screw up the result even if they do suggest testing this).

[Kris4444]

Wow. We have so much in common it's crazy.

I was diagnosed with scleroderma initially because of my Raynaud's and GI issues. I decided to see a specialist and flew out to Johns Hopkins where I was told that I don't have sclero, I have undifferentiated connective tissue disease but more than that, the doctor felt I had a severe flushing disorder and sent a request to Mayo in Rochester, MN to have my autonomic nervous system tested.

I DO have high NE and NME levels. They tested them at Mayo 656 supine 1199 upright. I am also on an SNRI (for my GI problems) so I don't know if the SNRI is causing the high levels or if my body is.

I too have been put on clonidine for the flushing. I don't see any improvement and I am taking it 3 times a day now at a dosage of .1. The GP called today and said that I should start upping it to the max of .2 3x's a day immediately since I'm seeing no relief.

After reading your post about trying to come off this drug it is making me think even more about taking a "medicine vacation" and just getting off of everything again to see what the natural state of my body is. The problem is that if I stop the SNRI then my colon will shut down again...it's the only thing that has given me relief.

How do you know that you don't have a mast cell disorder? That is the avenue I am exploring now. Have you been tested?

I feel your frustration having doctors who don't have a clue. As helpful as it was to go to Mayo, they throw you back at doctors who aren't familiar with diseases that are this rare and so I too am floundering, trying to figure out what to do.

I will share my journey with you as I hope you will share yours. Maybe together we can get some answers!

[~elizabeth~]

I originally had a dx of UCTD (based on positive ANAs and polyclonal gammopathy) but that was because the the rheum missed the Ehlers Danlos completely. I think you can get those markers with autonimmune thyroid disease without them being particularly significant. I was originally taking hydroxychloroquine when all of this started, we also added mepacrine (which apparently usually works well to get rid of lupus rashes) but it didn't alter a thing. The specialist who originally diagnosed the POTS (the leading autonomic specialist in the UK) didn't think it was Mast Cell issue, he wrote that it was 'some variant of erythromelalgia, possibly related to sudomotor issues'; I think he also thought I might have hyperpots as he suggested I double my dose of Clonidine from 200mcg a day to 400mcg. This didn't help, I find if I increase the dose it seems to wear off after about 4 hours and have a severe rebound/hyperemia episode. I've since read that suppressing NE can actually worsen supersensitivity issues by increasing the number of peripheral alpha2 receptors, platelet aggregation and increases their sensitivity to temperature.

I tried duloxetine (SNRI) for a few days, it really made things much worse for me, and had terrible rebound Raynaud's symptoms when I stopped that took weeks to wear off. I'd be wary of coming off as I think withdrawal from SNRIs can be very difficult.

I'd hoped betablockers would work better than the clonidine (particularly as they come in slow release form) but other than stopping the tachycardia from going through the roof, they aren't helping with the NE excess symptoms. My BP is still high, I feel wired and hot, my face is painful. I found an article on Clonidine withdrawal in which betablockers didn't help alleviate symptoms, they actually raised BP and NE levels for some patients. I really need help with these issues, but I've a feeling even the specialists won't know what's going on. My gut feeling is that what I have is denervation supersensitivity to neurotransmitters inc. NE, which is why I'm reacting badly to even fairly subtle spikes of NE due to the short-acting nature of the clonidine. My problems are all worse in the early hours of the morning and get worse on rising, I think that's the worst time of the day for suffering increases in NE levels.