Claire
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Posts posted by Claire
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On 1/3/2005 at 9:27 AM, MightyMouse said:
I've tried to wean off it too--but have not yet been successful in doing so. The only thing that has helped me was to slowly reduce my dosage over a period of weeks. That said, when my dose got down too low, my guts completely stopped working. Apparently, I was benefitting from the drugs even if I didn't "feel" like it helped--for now I'm staying on my low dose.
Nina
How low a dose are you on?
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Hi Weary, how rude of that nurse to say that! You know I had 2mini strokes because of blood pressure. That was no fun. Clonidine did work for me in that it does bring blood pressure down fast and calms you down. Why don’t you try it? Your pressure is dangerously high!
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16 hours ago, Weary said:
The zebra one doesnt like ordering anything hes not had experience with He tbought was worth trying (his son takes it for primary immunodeficiency) but thats when he thought other doc had ordered it. Havent started yet. When i inquired to fibd out if insurance approved it yet is when he is dumping me
tell me more about the clonidine- especialky the rebound part. So my concern is when it wears off, my bp will skyrocjet to unchartered territory.
I know i get to hypertebsive crisis periodicalky my highest gas been 220/110
Yes feel awful revved up hard to talk and breath at same time dizzy
Have been in ER during one but was useless i wanted to be admitted but they refused but yeah the docs and nurses freak out when they see values like that doc tiday was concerned one of tbese spikes will give me a stroke
dont k ow if have hyperwndrenergic pots since have not had the formal testing somet things fit, some dont
Have you had blood metenephrines checked and if yes what were results?
Yes for sone reason this rheum today took it all seriously he is asmart guy but coukd not think of a single thing i had not tbought of he tried so hard The nurse intereupted and asked him when hed be going to the patient waiting next door...
i have also list massive weight since last visit 13 lbs less than last visit may 2017 which is very big for ne since i do t weigh much many foods trigger attacks
tes
My experience with high blood pressure is I had two mini strokes because of it! Please take it seriously, go to the er to get help. Mini tropes are nothing to play around with. The drs there put me on lisinipril, amopoline, and Clonidine 0.1 mg. I stayed on acebutolol2 x’s a day the
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On 1/10/2009 at 3:59 AM, ramakentesh said:
And if so how did it affect your POTS?
What is a cycled vasoconstrictor-Clonidine?
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On 6/15/2015 at 12:57 PM, MomtoGiuliana said:
Hi jingles
Welcome to the forum.
It can take weeks to adjust to an SSRI.
My experience was an intensification of POTS symptoms for about a month and then finally after 8 weeks I started to experience improvement in symptoms. It was a long haul but worth it in the end, to me. I remember having nausea and even vomiting while adjusting. As well as more dizziness (and anxiety, for me). A side effect of SSRIs is autonomic dysfunction! This should not be a long term side effect however, especially as that is what it is being taken to treat of course!
I think it best to talk to your doctor about any intensification of symptoms. My doctor was unconcerned and told me to please try to get through it as he believed I would improve after the adjustment period. I think doctors and others who have not experienced POTS don't understand just how intense and disabling the symptoms can be.
As I said though, for me, an SSRI was a benefit, after adjusting.
I am so happy for the people who take ssri’s and it helped. It not only made my blood pressure lower it made my blood sugar super low. I am weaning off it now and I am very disappointed. My Dr did warn me, but I didn’t listen.
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Hank you. I’m so confused!k.
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I’m so sorry but I am having trouble understanding this. So, are ace inhibitors bad for autonomic neuropathy? Thank you.
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So... ace inhibitors are bad for pots? Am I understanding you correctly?
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Can I ask why you stopped the linispril?
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What about ace inhibitors do they help with your pots or hurt
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Is autonomic neuropathy the same as pots? I have low blood pressure in the mornings and it rises later in the day. Was on amitriptline for 10 years and liked it but after I had 2mini strokes because of high blood pressure, the drs in the hospital took me off fludrocortosone and amitriptline. I know why the cortisone, because it made my pressure super high, but can’t figure why the amitriptline. They said it made my pots worse, lowering my pressure more. Don’t know if this was true or not. Any experience anyone?
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How do you tell the difference between hyperadregenic pots and another type of pots. My Dr said pots is pots. No help there.
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On 8/13/2018 at 5:37 PM, p8d said:
@Claireit’s used, as far as I know, only for hyperadregenic pots. I find it extremely helpful.
Can you tell me how it’s helped? Thank you.
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On 3/2/2010 at 11:02 PM, Kitsakatsa said:
I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased.
It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed.
What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan.
Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that.
I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS.
Kits
I know this is from 2010 but I am trying to figure out if Clonidine helped
me be able to stand and walk around in the mornings cause my blood pressure is so low. When I took it, it seemed I didn’t have the problem with having to constantly sit down because of the blood pressure but I started having nightmares and chest pain so I weaned off. So, not sure if the pots in th morning is worse because I stopped or what. Does anyone have experience with this particular problem. Thank you for any suggestions.
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On 3/2/2010 at 11:02 PM, Kitsakatsa said:
I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased.
It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed.
What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan.
Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that.
I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS.
Kits
Can someone tell me. Does Clonidine help Pots or not? Really like to know anyone’s experience or info. Weaned off it and now suffering serious anxiety even though I am on Lexipro nd that was working fine.
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Thank you, Wintersown. I appreciate your help.
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1 hour ago, WinterSown said:
I looked up Clonidine, it has a wonderful set of side-effects (not!) which should be added emphasis for you cutting down your doses. You are going to have to find a way to catch your zzzzs. I don't have a sleep cycle anymore. I crash after dinner and wake up around midnight. I walk my dogs, I work on the computer, catch up on youtube vids, read, make cakes from scratch. I do all sorts of things that are not too noisy so I don't wake the house. Then I go back to sleep around 530 or 6am, and wake up a few hours later. Wash rinse repeat.
When we travel, for the sake of Hubs, I do take something to help fall asleep. I have a low-dose diazepam script for vertigo and one of them is all I need. When I would rather not dope myself I try to settle down with a cup of herb tea in the most boring flavor I've got in the cabinet, I pick up a book of something equally blah to read and I do drift off. Setting the mood to relax and rest is very important to finding that rest. A little tea, an author I hated in highschool, and a comfy chair or the couch really help me relax and unwind. These are things that I do that help me. You are your own person still and have things that you know make you feel calmer and more settled. Do them. Do something quiet and calm that lulls you away. zzzzzzz
Thanks. Think the anxiety will go away soon?
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13 hours ago, WinterSown said:
I had some conflicting doctors in the beginning but not anymore. The majority of my doctors all have access to my electronic records which are constantly updated each visit regardless of who I see. The few who are not in that same hospital group have no ability to go up against the opinion of six specialists. Period. The more doctors you have that treat your dysautonomia the less doctors can dispute your condition or treatment. If your doctors are in disagreement bring it up on the spot so it won't continue. Ask, no demand! why there is a disagreement and how it is to be worked out so you can heal without conflict from two doctors who have not expressed their opinions to each other. You can always say "I don't agree with your opinion and neither does Dr Other. Call him please and let him know your concerns because I need to be treated effectively. " I won't tolerate this. I won't let doctors twist up my brains anymore. I have enough problems with dysautonomia and I do not need some wannabe medical opinionist throwing their sabo into the machinery of my care.
Wintersown, I am having the worst time weaning off Clonidine 0.1. Following my drs taper, experiencing the worst anxiety I have ever been thru.you seem to have lots of experience and help people, do you know how I can cope with this and how long it will go on? I took it along with other blood pressure meds for 6 weeks, 0.1 mg and now I was told to cut it in half. Like I said, anxiety terrible and can not sleep. Please help! Thank you.
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Wondering what your experience was getting off Clonidine, was it difficult?
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Could anyone tell me their experience with taking Clonidine 0.1 2 s a day and Lexipro. I read here that the Clonidine stops the SSRI from working, is this true?
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2 hours ago, bombsh3ll said:
Claire how come you came off the Florinef, was it causing side effects?
I have tried it several times too and couldn't tolerate it (headaches, high BP, palpitations due to potassium dropping). It also didn't help my presyncope or make me able to stand.
I was only taking half a tablet and stopped it 2 days ago.
Have you ever tried licorice root? I take this and the effects were miraculous for about 1 year then waned. It is a natural alternative to florinef which for me has no side effects.
SSRIs can take up to 6-8 weeks at therapeutic dose to work. (side effects can occur sooner but are often short lived)
I am dubious about their usefulness in dysautonomia unless to treat co-existent depression which is quite understandable, however some people do report significant benefits.
B x
I had 2 mini strokes and was hospitalized because of that. It made my blood pressure very high so they weaned me off immediately and started me on Lexipro the same day. They told me never to take it again, as I would have another stroke and this time it would be worse. Right now, after weeks of weaning, I am now Florine free for a week and a half but boy is my blood pressure low. I don’t know what to do about this and am hoping after a little time, it will come back up.
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On 7/28/2005 at 1:44 PM, yogini said:
I had a lot of trouble weaning off florinef. It took me 3 tries over several months. I kept getting bad flare ups of symptoms. But I had to keep trying b/c my BP was getting too high. I finally did it 1/4 pill per month and it worked. I have been florinef-free for 6 months! I may be an extreme case. I would say reduce as slowly as you can and hang in there if your symptoms act up. The symptoms will probably go back down again, though it may take a few weeks.
After weaning, did you your pressure go way down for a while and did It ever go back to normal numbers? After stopping, I am super low all day. Can’t live like this.
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Does anyone have experience with how long Lexipro takes to kick in? I started with 2 weeks on 5 mg, and 3 weeks on 10. Is there anyone who has taken this and gotten results and how long did it take?
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Ok. Totally weaned off the Florine’s one weeks ago and now my blood pressure is super low all day. My quality of life has just about come to an end and I have a special needs son to care for everyday, I.e. shower, shave etc. I am on Clonidine but it’s not helping. Suggestions anyone, or is my life over?
Huge bp fluctuation
in Dysautonomia Discussion
Posted
Weary, I am so sorry about the email you received from me that was not meant for you. I sent this to my son David last week. How it ended up going to you, I can’t figure out. Still trying to find out. I am sorry.