merkat30 Posted September 23, 2020 Report Share Posted September 23, 2020 Hello everyone I have been prescribed clonidine 25mg for Hyperadrenergic dysautonomia/pots I been on it 11 days mabye I seeing no improvement I give u little background ...I have low blood pressure and high blood pressure daily it goes from low 76s to high 190s I have all the ussal pots symptoms sweating on standing nausea shakes tremors goosepimples blurred vision i also have horrible adrenaline surges it just horrible leg pain arm pain feeling like somone tugging on my viens stomach problems also have mcas so medication is a problom I could go on but I haven't the energy . So just wondering anyone else has took cloidine how long if it helped cause it making me feel very unwell at moment🤧🤢😪😴top of got toothache ... Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 24, 2020 Report Share Posted September 24, 2020 @merkat30 - I have HPOTS with similar symptoms as you. I took Clonidine for a few days several years ago and had to stop. It caused really bad nightmares, anxiety and high BP at night for me, and extreme sedation during the day. I HATED it and will never take it again. I only took a very low dose but could not tolerate it. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted September 24, 2020 Author Report Share Posted September 24, 2020 Hi pistol thank for replying .My pots clinc is ringing me today I had a 5minute talk yesterday with a Male nurse he saying they probably put the dose up well I feel that be a bit silly with me having real low bp to ... we will see what they say today .feeling horrid as ussal .all appointment over phone in uk due to covid .feeling alone my dr on holiday for 3 weeks now not that she much use like. But was somone talk to .it scary feeling like u have look after yourself . Quote Link to comment Share on other sites More sharing options...
p8d Posted October 1, 2020 Report Share Posted October 1, 2020 Be aware of the known side effect of hypertensive rebound with clonidine. It worked great for about 6-8 hours for me but when it wore off, especially overnight my BP soared into crisis territory. They do make a 24 hour patch that should help if you can get the dose sorted out. Quote Link to comment Share on other sites More sharing options...
Chiara Posted October 1, 2020 Report Share Posted October 1, 2020 I had clonidine for only in high bloodpressure cases, when my bloodpressure was up to 170 and higher. It works for me wonderful for a while, but suddenly it gaves me high bloodpressure and a very extreme sedation during thed day, so I never take it. My specialist changed my bloodpressure medicine for this cases to hydrazalin. It works very well for me. Quote Link to comment Share on other sites More sharing options...
POTSius Posted October 1, 2020 Report Share Posted October 1, 2020 2 hours ago, p8d said: Be aware of the known side effect of hypertensive rebound with clonidine. It worked great for about 6-8 hours for me but when it wore off, especially overnight my BP soared into crisis territory. They do make a 24 hour patch that should help if you can get the dose sorted out. I can share from my own experience that with the pill I had symptoms as I came off it every night but that with the patch the positive effects of the drug are much more stable. I probably would not have continued with clonidine if not for the patch. I should note, however, that even the patch is not perfect. I notice that over the course of wearing a given patch its effect tends to weaken day by day. Because of this, I change it more frequently (as discussed with dr) than the recommended 1 patch per week Quote Link to comment Share on other sites More sharing options...
Berry Girl Posted December 14, 2021 Report Share Posted December 14, 2021 I have been on clonidine .2 patch for 3 1/2 months. Over time my leg started to tingle and now it’s worked its way up to my knees and spread to my other leg With an also have a feeling. Itused to be very seldom and now it’s almost constant and it’s worse when I stand. This is only one of the many problems I’ve been having while on this patch. Is someone else out there that is is having the same problem? I could use any information any of you have about the side effects of this medicine.I want to get off this medicine. But I’m very afraid of were spiking. This is not controlling my blood pressure 100% Quote Link to comment Share on other sites More sharing options...
Berry Girl Posted December 14, 2021 Report Share Posted December 14, 2021 Feeling in legs is heavy now. Sorry for typo before . Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 15, 2021 Report Share Posted December 15, 2021 @Berry Girl - I would notify your doctor right away of these symptoms, they could be a side effect but could also be unrelated to the medication. Weaning off clonidine has to be done carefully and under the supervision of a doctor since stopping it suddenly or reducing it too quickly can cause serious symptoms. I have also heard from people tolerating clonidine for a while and then developing unwanted effects from it, even an increase in BP ( although it is given to reduce the BP ). It is a very powerful drug and it is important that you share these symptoms with your doctor right away. Quote Link to comment Share on other sites More sharing options...
Picklesquish Posted December 15, 2021 Report Share Posted December 15, 2021 @Berry GirlI’m on .1 patch since October. My only complaint is the patch doesn’t seem to cover the full 7 days. I sometimes get adrenaline spikes around day 7. I would talk to your doctor for sure. And please don’t just remove the patch. I made that mistake and within a day was having horrible rebound symptoms. Quote Link to comment Share on other sites More sharing options...
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