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Posted

Thank you Bella, Morgan, Summer, whatswrongwithme, and ramakentesh who responded to my original posting about starting Clonidine. Well for the last two days I haven't taken my metoprolol (I was down to a pediatric dose of 6.25 mg) and actually my b/p has been lower off of it, but of course, when I stand my h/r now goes to over 100! It's amazing how small of a dose kept my h/r under control but not my b/p.

Anyway, I'm not sure what I want to do. I've read horror stories about the Clonidine. I'll only be taking 1/2 of a .01mg pill at bedtime only, but I'm wonderfing if this is what I need. I didn't have much faith in the dr and I know that this drug is supposed to be taken more than once a day and yet I'm to take it at nighttime only.

I'm scared that it may cause more palps, raise not lower my b/p and scared that it won't work on the tachy.

Please I know I'm asking alot, but any support or info would be so appreciated. I guess because I will be here myself when I take it scares me. That's if I take it. I'm still not convinced that it will help and it probably won't do anything for my PVCs or PACs.

Also, I checked on drug interactions and this is what came up:

"Clonidine/Beta-Blockers

This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment.

MONOGRAPH TITLE: Clonidine/Beta-Blockers

SEVERITY LEVEL: 2-Severe Interaction: Action is required to reduce the risk of severe adverse interaction.

MECHANISM OF ACTION: Beta-blockers inhibit the vasodilation mediated by the beta 2 receptor leaving the vasoconstriction mediated by the alpha 2 receptor unopposed.

CLINICAL EFFECTS: Severe hypertension may occur upon abrupt discontinuation of clonidine in patients receiving both clonidine and beta-blockers.

PREDISPOSING FACTORS: None determined.

PATIENT MANAGEMENT: In a patient receiving both drugs, discontinuation of the beta-blocker prior to clonidine may decrease the occurrence of rebound hypertension. If clonidine is discontinued first, rebound hypertension can be treated by restarting the clonidine or by the IV administration of phentolamine, phenoxybenzamine or prazosin. When adding either of these agents to the drug regimen of the patient, monitor blood pressure. Since labetalol has both alpha and beta activity, administration of labetalol may prevent rebound hypertension in patients undergoing clonidine withdrawal, although conflicting reports exist.

DISCUSSION: Increased blood pressure has been observed in patients following: 1) the discontinuation of clonidine in patients receiving beta-blockers, 2) the replacement of clonidine therapy with beta-blockers, 3) the simultaneous discontinuation of both drugs. Conflicting reports exist on the development of increased blood pressure after clonidine withdrawal in patients receiving labetalol. Patients receiving labetalol who are being withdrawn from clonidine should still be closely monitored".

So, does this mean I have to wait till the beta is completely out of my system or that if I don't like the clonidine (if I take it!) that I have to wait to restart the beta? Scary!

So, I could use your help and advice!

Thank you all so much fo listening to me being neurotic!

Rene

Posted

Rene,

I don't have any experience with Clonidine, but I do know how frightening it is to start new medicine. Hang in there and make sure someone is with you when you take the first dose. For me, a little comfort and reassurance can help calm those nasty, scary feelings when starting a new medicine.

I also take metoprolol 12.5 mg 3 times a day and it does help my tachycardia. Did you wean off of it slowly? If you go off of it too quickly even when on a very small dose, sometimes you can have an exacerbation of symptoms. Just wanted to pass that on, too.

Sorry I con't help you more but know you will be in my thoughts and prayers tonight.

Babette

Posted

Rene,

take it the way you were told and don't be afraid it takes a few days to adjust usually your doc rechecks you in a week. When do you see yours again? Mine would also joke with me and say did it also tell you you's see pink spots or get purple hair on your face? LOL! He would make me laugh and make me understand that they have to list the side effects and most of them are rare, but they have to list them all.

Sometimes it best not to read them if you are anxious. The Clonidine was the best thing I ever took Rene. I got some sleep for the first time in my life. It's still fragmented, but I get some. If I went from a whole pill to a half a pill, Yes I had rebound tachy and we treated it with a bit a tiny piece of a bb which I am allergic to. I would do that over the phone with my doc rather than go to the er and be treated by a staff of Doctors who still do no know how to handle POTS. They treat me every time like I'm having a heart attack or it's anxiety and My doctors know me better. I have my meds and we micro manage any emergency for Pots except dehydration over the phone every 2 hours till safe.

Sweetheart, we can't tell you how or what to do. I also understand being alone. I would always tell my son when I was starting a new med and he setup Gmail video chat and phone on my computer by my bed so I was never alone. When he was out he would get me on his Ipod/internet if I was in trouble, and call me back on his phone. You need to set up some safety nets with your family or friends. This has been real helpful also he can video chat me once he is home and see what is actually up with me. We are starting to get the whole family doing this and it's a wonderful way to see each other a stay connected to talk and video chat all for free all you need is a camera.

Be well my friend.

Blessings and Love,

BellaMia~

Posted

Rene,

I have not had experience with any of these meds, but I just wanted to let you know that I'm thinking of you and how scared you must be to have to try yet another medication without knowing how it'll affect you. Starting/stopping/changing meds has become my least favorite things to do, and I'm sure you'll get a lot of agreement from people on the Forum. If you're trying a tiny amount, and if you came off the other drug appropriately, I would get this a try. You never know, it might be the best thing you've ever taken! I was I were there with you so you'd have a friend by your side as you take the Clonidine. Please write tomorrow and let us know how it went. I know you can be a strong, brave woman. My thoughts are with you...

Blessings,

love, jana

Posted
Rene,

I don't have any experience with Clonidine, but I do know how frightening it is to start new medicine. Hang in there and make sure someone is with you when you take the first dose. For me, a little comfort and reassurance can help calm those nasty, scary feelings when starting a new medicine.

I also take metoprolol 12.5 mg 3 times a day and it does help my tachycardia. Did you wean off of it slowly? If you go off of it too quickly even when on a very small dose, sometimes you can have an exacerbation of symptoms. Just wanted to pass that on, too.

Sorry I con't help you more but know you will be in my thoughts and prayers tonight.

Babette

Babette, question about tapering the metoprolol since my cardio is an idiot. I was only on bbs for 2 months trying a few. I was taking 6.25mg of the metoprolol for about 2 weeks, then this week for about 3 days went to 6.25mg and skipped yesterday. Do you think I'd be better off taking the metoprolol at a bit under that amt every other day for a few more days? I'm so confused. And the drs. disagree with one another. I'm scared that I will have a heart attack or some weird arrythmia.

Thanks!

Rene

Posted

Thanks sweet Bella. You always know what to say. I'm still not sure if I'm ready to take the step tonight. I have no one around and yes my anxiety is getting the best of me. I don't have a great primarydr. so I don't have the ability just to call and say what I'm doing. The specialist recommended the clonidine and I'm not due to see him again till Aug. This is all so scary!

I'll let you know what I do/don't do!

xoxxo

Rene

Posted

Hi Rene,

It really is scarey to try something new, but remember, "nothing ventured, nothing gained." It might turn out to be the best med you have tried. It has been for many.

Even though clonidine did not turn out to be the med for me, I did not have any really scarey reaction to it. Infact, it made me feel very relaxed and a bit sleepy. I took it for a number of days before deciding my BP was running too low on it, but I was not in any danger, just felt faint when I stood up - nothing new for us.

I hope it turns out to be just the thing you need. We are here for you! Let us know how you get along in the morning. I'll be checking to see! Take care, and I will pray for you tonight.

Talk to you in the morning:)

Summer

Posted

Rene,

We'll all be here for you. Nothing is going to go wrong. We are all her for you. I know this will help. We will all be waiting to

hear from you. I'll leave my computer on all night for you.

xxxxx

BellaMia~

Posted

Thanks, Jana. I'm not sure if I'm going to give in tonight or wait another day. Why would something like a little pill scare me so much? I'm so intolerant of meds that I can't stand it. I wish I had a great dr that would listen to me and manage all of these things. The problem is, I don't. And I'm not an MD!

I hope you are doing ok. I posted to your post as well.

I wish you were here as well!

Hugs,

Rene

Posted

Hi Rene,

I have had a lot of experience with Clondine. Starting as low as possible was the only way I could get on it. I need an increase now, but am waiting to see Dr.Grubb since Dr. Coglan has retired. I was much better a few years ago. It really does help if you have the hyperadrenergic type, and it helps with sleep. My heart goes out to you. A prayer for you tonight. :rolleyes:

Mary

Posted

I hate starting new medicines too, but for the most part I've been fortunate. No absolutely horrid experiences.

My worst experience was increasing a dose of something I'd been on (and was helping) which was a big set-back for a week for me...so while it was a couple really crappy days, I was still 'ok.'

Just remember, if something doesn't work you don't have to stick with it. I try to give things enough time to work (if they are causing no great harm)...but hopefully it will work for you!

Posted

Ruekat,

When my doctor decreases meds that need tapered, he always has me get to the lowest dose I can cut it into and then I start taking it every other day for a week, then every 3 days for a week or two, then every 4 days for a week or two, and then every 5 days for a week or two. He always takes me off meds very slowly. I am extremely med sensitive. ;)

I'm not sure what your doctor recommended, but perhaps you could ask him/her for a recommendation on a slower tapering schedule.

Sorry I didn't get back to you sooner. Did you try the Clonidine yet??

Babette

Posted

Ramakentesh, The names have changed over the years. The type that I have has been called Autonomic Nerve Disease, Hyperadrenergic Dysautonomia and Hyperadrenergic OI and POTS. There has been so many symptoms. Dizziness, nausea, fast pulse, flushing, cold hands, lots of pooling, cold feet and past knees very cold, when too warm feet very red and hot, the dizziness has been so bad that I wake in the night, with the room spining and I can not walk, it feels like something is pushing me back if I try to walk. The pooling, and coldness has improved, but I still wake in the night and can't walk if I have been too active or standing more than my body will put up with. Still floating,rocking,riding the waves everyday. Soon I hope to hear what the newest name or names might be . ;) Mary

Posted

Dear Rene,

Are you being good?? And you KNOW what I'm talking about!

Love, Jana

Posted

rene

where are you? :)

please contact us.

bellamia~ :blink:

Posted

Sorry Bella!!!! Didn't mean to scare you. Well, Clonidine didn't go so well. My b/p remained high, I felt shakey and totally out of it. Oh well. I know, I'm bad in responding to your emails! I promise I will. Just alot going on here.

Sorry about what happened when you tried to go to the drs. I'll elaborate more when I email you.

Thanks for caring about me!

Hugs,

Rene

Posted

HI Jana,

I'm trying to be good! Not always easy. Some days are better than others. I'll email y

Hugs,

Rene

Posted

Good to hear from YOU Rene~!

I too have been checking to see how you are doing. Were you taking the Clonidine every day..all day long? I only use it as a PRN though told it can raise BP I should watch the BP. Its been fine and only needed it a few times anyway. I think if I had to take it ALL the time..I would be reacting more..like you.

Your symptoms warrant that you take it every day then?

Sorry about your reaction...dang.

Warmly Jan

Posted
Good to hear from YOU Rene~!

I too have been checking to see how you are doing. Were you taking the Clonidine every day..all day long? I only use it as a PRN though told it can raise BP I should watch the BP. Its been fine and only needed it a few times anyway. I think if I had to take it ALL the time..I would be reacting more..like you.

Your symptoms warrant that you take it every day then?

Sorry about your reaction...dang.

Warmly Jan

Hi Jan,

Thanks so much for caring! Yes, I was to take it everyday. Two doses were enough. B/P went higher!

I stayed off Betas and for 2 days my pressure was nearly perfect but then I went totally tachy. Yesterday No tachy but high b/p. Grrrr. I broke down last night and took the smallest amt of metoprolol and it brought my b/p right down. I just hate the way the beta make me feel. I wish there was another med. He did mentioned mestinon (sp?) but said it would help with the tachy, not the b/p. Very frustrating.

I asked about starting just a "regular" b/p med and was told that since my b/p normally is low is am and pm that it wouldn't be the thing for me.

Hate being my own dr!!!! But we have to look out for ourselves.

Be well,

Rene

Posted

After doing some reading Clonidine is probably most useful in POTS patients that exhibit increased peripheral resistance - that is their hands get cold and cyanotic when they are symptomatic. By stimulating alpha 2 receptors it eases this. If this isnt a problem for you it may not help so much, but as Ive said ive never heard of it being used before bed.

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