Clonidine

[Mrs. Burschman]

I was wondering if anyone here who typically has low blood pressure has taken clonidine.

I read a study about clonidine being used successfuly in ulcerative colitis patients, but I know it can lower blood pressure. Anyone have any experience with it?

Thanks!

Amy (Mrs. Burschman)

[juliegee]

Hi Amy,

My son takes clonidine. His BP is low/normal with florinef & salt. The clonidine increases his blood volume, helps him sleep better, increases his gatric capacity (i.e. helps him eat.) The clonidine did make his BP too low when he lowered his dose by 1/2 pill- the opposite of what you'd expect! The whole pill also made him feel tired, esp. hard for him to get up in the AM- that's why he lowered his dose.

Why are you considering it? What symptoms are you hoping to deal with?

Julie

[Mrs. Burschman]

Hi Amy,

Why are you considering it? What symptoms are you hoping to deal with?

Julie

That is interesting about his blood pressure. You wouldn't think that a drug meant to lower blood pressure would raise it in some people. We're just goofy, I guess!

Although I don't know what type of POTS I have, I do know that I have sympathetic overactivation. I went to an expert on biofeedback a while back, and he could tell that was the case.

I read an Italian study that found ulcerative colitis patients saw improvement in their disease with clonidine patches. I have a theory that both my colon and bladder inflammation problems might be linked to my overactive sympathetic nervous system. Neither are "typical" cases of ulcerative colitis or interstitial cystitis. I'd be curious to try clonidine to see if I see improvement in those symptoms. But I certainly don't need to lower my blood pressure, which is why I was asking. One of the last times I went to the doctor, it was 80 over 50.

[Mrs. Burschman]

Here's an interesting tidbit from the study: "The sympathetic over-activity observed in the active phase of UC seems to play a crucial role in generating/sustaining the bowel inflammatory state giving the fact that the administration of a sympathoplegic drug, such as clonidine, was associated with a clinical amelioration of the disease whereas placebo was ineffective. ... In conclusion, our observations highlight the crucial role played by an enhanced sympathetic activity possibly in maintaining the inflammatory process of the gut. In this context, clonidine administration was found to reduce the abnormally increased sympathetic activity and improve clinically active UC."

[Mrs. Burschman]

One more thing: It seems that Paxil helps me by "calming down" my sympathetic nervous system. I would dearly love it if I could find another drug that did the same thing, so that I could reduce my Paxil dose. It has some icky side effects.

[Maxine]

Interesting information on the clonidine helping with inflammatory bowel disease. At one point I had a bit of a POTS crash and my anxiety levels were up, but a health professional misdiagnosed "hyperadrengic" POTS, and she was going to prescribe clonidine. My BP was still really low, so I asked for the blood work to check for catecholamine levels. They were normal, so I declined the clonidine, and asked that the "hyperadrengic POTS" be removed from future clinical notes, as this would confuse other medical professionals trying to help with my symptoms.

I have no idea if I have inflammatory bowel disease, but 3/4 of my large intestine is covered in diverticuli--- I'll know soon---as a virtual colonoscopy will be done as soon as the insurance clears it for me to be admitted to have it done because my BPs are still really low and heart rate isn't compensating-- I'm feeling like I'm climbing a mountain everytime I move. Trying to load on fluids, and salt to help right now. It's not easy when your gut always feels bloated, and just a tiny amount of food makes me feel like I've swallowed a bowling ball.

I have a good friend who used to tell me to call her bowling ball head, and I guess I'm bowling ball gut---lol.

Maxine :0)

[juliegee]

Amy,

All of that info helps me understand why you want to try clonidine. Dr. Rowe, Mack's doc, wanted Mack to try the clonidine for it's relaxing benefit. Taken at night, it makes him sleepy. Mack says he gets "better use of his sleeping hours." He falls asleep quickly and feels more rested when he wakes up. As I mentioned earlier, Mack thought it made it too hard for him to wake up, that's why he reduced his dose.

Prior to clonidine, Mack also was having trouble eating when he had a "high stress" day. He plays lead guitar (he loves it!) in a band & on days when they perform, he was NOT eating until the performance was over- no matter what time of day that was. Grrrrr. Not good.

So I guess that kind of works with your theory. The clonidine helps relax him & slow his nervous system down. Dr. Rowe also says that it increases his blood volume, making it less likely that he will faint. Maybe it will similarly calm down your bladder & GI tract.

I know clonidine is traditionally used to treat high BP, BUT it also has the properties listed above....

I have a few thought on your situation. You are aware that metformin has MAJOR GI side effects. I wonder if that's contributing to your GI issues. Your BP is very low. I'm going out on a limb here, but I can't help but wonder if your mast cells are overacting & may be behind your GI & bladder issues. I have also been DXed with interstitial cystitis. (I'm in remission now- Thank God!) and I've had major GI issues most of my life too, with super low BP's.

Have you ever been treated with steroids? Did they help? How about florinef? That has steroidal properties and has pulled my BP up during really rough times. I might consider a small trial of florinef to see if that gives you benefit. Taken with salt & lots of fluid, it will definitely boost your blood volume. If your over-reactive mast cells are behind your hypotension. All of this should help. Overly reactive mast cells can cause your blood vessels to leak out causing the low blood volume and low BP. Keep in mind that Mack takes florinef & salt tablets (thermotabs) with his clonidine.

I have responded well to a combination of H-1's (zyrtec in the AM & atarax in the PM- you could try benadryl) and H-2's (ranitidine or zantac) to calm my mast cells down. Strangely enough, they also have calmed my autonomic & other symptoms too. Antihistamines are regularly used in treatment of interstitial cystitis and they are being increasingly used in UC when no know cause can be found. They're pretty benign & OTC. I might consider a trial run and see if they help things.

I know I'm throwing lots of ideas at you & God knows I'm not a doctor I just had to learn a lot about this- the hard way. Between my son & I, we've tried many different therapies and (for the most part) have stumbled upon some pretty good med regimens. Keep in mind, anything new that you try should be added one at a time so that you can measure the effect of each drug. Some meds, like florinef should also be started at really low doses and titrated up slowly. One last idea, I hope you are taking a daily probiotic. Mack & I use Culturelle. That keeps the bad bacteria in the GI tract down & the good bacteria up.

Ignore my PM- I hadn't read any of this.

Julie

[Mrs. Burschman]

I know I'm throwing lots of ideas at you & God knows I'm not a doctor

That's OK, Julie. Sounds like you know a lot more than 99 percent of doctors I've ever met!

I really appreciate your thoughts. I have wondered about the mast cell thing, or autoimmune issues. It's so frustrating to not know what's going on. Maybe it wouldn't make any difference, but it sure couldn't hurt!

Right now, it's likely that I'll just stick to the Paxil. I'm not thrilled about that. It has some side effects I don't like. But it does do a pretty good job of controlling my symptoms, as long as I don't get too hot, or overdo it ... you know the drill.

Thanks again for your ideas!

Amy

[juliegee]

Hi Amy,

I don't necessarily think it's one or the other (auto immune vs. mast cells behaving badly.) The latest research is implicating overly reactive mast cells in the earliest stages of auto-immune diseases.

I think it's smart to stick with the Paxil. (Mack also takes Lexapro, in addition to the other meds I mentioned.) SSRI's can be an important part of a med regimen for dysautonomia. BUT, don't be afraid of trying other meds with it. I hope you have a good doc who can help you oversee some of the trials I mentioned.

Mack and I both take between 10-11 different meds daily. We drop and add them as needed. Not ideal, but we both are able to function pretty well with them.

All the best in figuring this out-

Julie