Clonidine -- Curious About Efficacy And Side Effects

[Sylvie33]

Dear all,

I did a search and see this medication cited in many posts, but I would like to zero-in here.

I would like to try Clonidine for severe anxiety; it is so severe the word "anxiety" does not do it justice. It is a severe, almost electric shock-like flooding: it surges and sets off really my painful GERD. Like nothing I have ever experienced before my ANS symptoms set in.

Some history: After a toxic reaction to anti-depressants, and a real beginning of a recovery, I experienced a sudden onset of dysautonomic symptoms (last April) for which I am currently undergoing (as I am sure you all know) a painstakingly slow evaluation. I do not have POTS, yet for the past eight months I have been virtually bedridden with severe fatigue. I also have excessive thirst, sweating, dry eyes, hair loss, GERD (test did come back very positive), neuropathies in hands and feet (very sensitive to walking now -- just had small fiber biopsies and am waiting for results) ... etc....etc

I do have MVP and have had heart irregularities in the past, but have not yet begun a cardio work-up.

Yet I am writing about my simply unbearable anxiety. I do take .75 mg of Klonopin at night (divided into three doses for when I wake up ... I have insomnia too...of course!). I do not wish to take it during the day for I am worried about addiction and dulling.

I am seeing a great psychiatrist/neurologist as my primary doc as testing is underway. He had to cancel today, so I thought I would gather some information here.

I do have high blood pressure, which is under control now (went up to 240/160 for weeks when I first had the reaction to antidepressants). I tried propanalol recently and it made my insomnia worse and did little for the anxiety. I am not reacting to meds well now.

Interestingly, I also cannot bear alcohol in any form now -- I was never a big drinker, but now it feels like I drank poison. Is this common?

So I would like to hear from those who are or have taken Clonidine. Is it helpful? Side effects? I know others out there are sensitive to medications -- how about this one?

Thanks so much!

Sylvie

[gjensen]

Sylvie, we are all so different. I am going to comment on what I can share that might relate.

Clonidine works by lowering epinephrine etc. At very low doses, it did help control my adrenalin surges etc. Nothing else was as effective.

As a result it did lower the anxiety that was associated with these surges, and it did lessen an overall feeling of being on edge. So it did help, but it was no cure. I also was on a low dose. I could have went up, but I elected not to.

Clonidine is commonly prescribed for people that have hyper pots, and/or present with a lot of sympathetic over activity. I certainly did early on.

Clonidine is on my list of drugs that did help me, and I did tolerate.

I was also surprised by Neurontin. Neurontin does help any anxiety I might have. It seams to calm a lot down without taking a drug that would affect my BP or be as addictive as the benzos. I looked it up after and was surprised to learn that it is commonly prescribed for anxiety off label. I am taking it for nerve pain.

As far as benzos, I found valium much more effective than the others. It has more effect on the muscles, and it seamed to do better at calming the body down rather than my brain.

Good luck.

[Psalm 23]

Hi Sylvie,

I was prescribed Clonidine about four years ago by my pots neuro for my odd variant of neuropathic pots with a hyperadrenertgic component. I had very high NE levels and extreme jitteriness which it greatly helped. I can see where it could possibly help anxiety if given in the right amount. I was started on 0.1mg bid and other then tiredness which wore off after a few days I didn't experience any problematic side effects. When tried at a higher dose however I was unable to function. Other then mestinon it was one of my best medications for quite a while. Over time my system has changed and my neuro felt it better for me to just take clonidine .05mg at bedtime as he thinks the higher dose is now doing me more harm then good. Basically now increasing fatigue and my already very labile blood pressure to hit lows ( 90/49 ). If you have hypertension hopefully you won't experience this problem with it. My b/p can be up to 200/110 but then hit lows as well which can cause problems with taking a medication like clonidine. If your doc is agreeable it may be worth a try.

In regards to alcohol intolerance I also became alcohol intolerant a number of years back. A neuro I saw a long time back associated it with CFS. A diagnosis I was most likely erroneously given. Alcohol intolerance is common with people that have mast cell disorders. I believe it is thought to cause degranulation. For myself the most likely reason for having alcohol intolerance.

I hope you find something that is helpful,

Janet

[Katybug]

I can only reiterate some of what gjensen and Janet have said.

I haven't taken clonidine, so I'm no help there.

However, I did just start Gabapentin (Neurontin) a few weeks ago. It was intended to help control nerve pain associated with my daily migraines. I have seen a reduction in my adrenaline response (or over-response, I should say.) I don't have anxiety, but the sweating, electric shock feeling of the adrenaline surges has been better the last couple of weeks.

I, too, have developed severe alcohol intolerance from mast cell activation syndrome ( MCAS ). Different types of alcohol give me different responses but they're all bad. Anything from violent projectile vomiting after half a drink, inability to walk due to lack of muscle tone (we're still talking half a drink here), to severe joint pain and flu like symptoms about an hour after consuming alcohol. Some rashes as well. Feeling like you've been poisoned is a good description.

I hope you get some answers with your biopsy results. Take care.

[Sylvie33]

Dear folks,

Thank you so much for your thoughtful replies.

I spoke with my doctor on Friday, and he stated that clonidine is a very bad choice for me: I did have out-of-control HPB last year, and apparently missed doses of this drug can cause this (to the point of death). Not a good choice.

I did find a thread on this site that weighs in on guanfacine (vs. clonidine) and reports far fewer side effects with it. I have an appointment on Thursday to further discuss options.

Meanwhile, again, I really appreciate your responses --

Sylvie

[elphabalover101]

I've been using clonidine for a little over a year now. I DEFINITELY saw a difference in my anxiety levels. The main reason I use it, though, is for my tics. I get really bad tics where my head will repeatedly jerk to the side for hours non-stop.

[Sylvie33]

Hi folks,

Again, thank you for all the advice -- just so wonderful to benefit from all your experiences.

Met with Dr. yesterday and he threw out the prospect of Neurontin or Amitriptyline (Elavil) for anxiety. I opted for the latter because I am still riding the wave of depression that brought in (or at least was coexistent in timing) of all my dsyautonomic symptoms.

However, I am worried about the anticholinergic effects of this drug. ( I have very dry eyes and constipation already: both arrived with other symptoms).

I have read it can be good for neuropathic pain (which seems to be increasing daily -- but at a tolerable level) yet I also read it can, in rare cases, cause it.

Ideas?

---Thanks again ---

Sylvie