m1279 Posted February 18, 2022 Report Share Posted February 18, 2022 I've been having a terrible time the last few months with really bad adrenaline surges at night. Often during the day too but it's 100x worse at night. I'm surviving on 0-3 hours sleep. The sleeping tablets I was taking and were just about keeping me sane have stopped working so I'm in a really bad place. I've literally tried every natural method to control these surges but I can't seem to get a handle on them so I'm exploring medication options. I've been diagnosed with CFS/ME but I've had many symptoms of POTS for years (it's just never been explored due to unhelpful doctors to be honest) and I'm beginning to feel it could be hyper-pots due to the symptoms I'm experiencing. I've read that clonadine can help a lot but I've just spoken to my GP who will not prescribe it for the reasons I am asking for it which I can understand but it's really frustrating. I've been prescribed a beta-blocker which I'm hoping might help. Has anyone got any experience with this? How do you treat it and is it possible to get a clonadine prescription in the UK? 0 Comments Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 18, 2022 Report Share Posted February 18, 2022 I’m in the same boat. No one seems think I need it, but I can’t sleep. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 19, 2022 Report Share Posted February 19, 2022 @m1279 and @RecipeForDisaster - I have HPOTS and used to have these surges as well, in my case they seemed more scary and severe at night because I wa more aware of them. I also developed very high BP during these surges, so I WAS prescribed Clonidine. I took 0.1 mg for almost a week and had to stop it. I was sooo sleepy the whole time, as if I had taken strong pain killers. And the last night I took them I developed severe high BP and I thought I was going to die. I stopped the med and never went back to it. Now - having said that, it is helpful for many people with HPOTS but because it is such a powerful medicine it is usually only prescribed for extreme high BP. Eventually my high BPs and most other symptoms improved on a combination of meds, including beta blocker ( for tachycardia ), Calcium Channel Blocker ( for high BP and excessive vasoconstriction ) , an SSRI ( which was very helpful in controlling the surges ) and eventually IV fluids via a port. With these medications I have been mostly controlled for 3 years. I am wondering if a SSRI could help you guys as well? Quote Link to comment Share on other sites More sharing options...
m1279 Posted February 19, 2022 Author Report Share Posted February 19, 2022 Hi thanks for the response. Unfortunately I've tried various SSRI meds in the past and all of them have left me with even worse insomnia. I didn't sleep at all for 72 hours on sertraline! I've not really heard of that happening to others though so I have no idea why they cause that for me. I might look into them again though as my symptoms have changed. I've been on zopiclone recently and that has allowed me to sleep but I still have the surge but it seems less intense or the med just makes me sleep through it. Also, that's obviously not a long-term solution here. My surges are objectively worse at night but symptoms are still sometimes bad during the day especially after eating, I find. Also around my period is terrible. Maybe Clonidine is not the wonder drug I was hoping for? I'm just disappointed to have been put on a medication that is likely to cause weight gain which seems such a trivial concern but with everything else falling apart in my life, I don't want to be overweight too. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted February 19, 2022 Report Share Posted February 19, 2022 CBD has helped in the past with deep sleep, I definitely suggest CBD but talk to your doctor first as it does increase certain neurotransmitters. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 20, 2022 Report Share Posted February 20, 2022 I have very low BP and don’t have hyper POTS. I have dabbled in CBD without any effect. Fluids are the most helpful thing for sleep, but since I can’t have PICC or port, I have to use them as little as I can. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 18, 2022 Report Share Posted March 18, 2022 On 2/20/2022 at 8:38 AM, RecipeForDisaster said: I have very low BP and don’t have hyper POTS. I have dabbled in CBD without any effect. Fluids are the most helpful thing for sleep, but since I can’t have PICC or port, I have to use them as little as I can. The only thing that helped me was CBD gummies and only 2 brands out of 20 helped but they have since quit working, really sucks because that was the best sleep I was getting. My doctors won't prescribe saline infusions even at an infusion center and they are super helpful for me as well. Quote Link to comment Share on other sites More sharing options...
angelloz Posted March 19, 2022 Report Share Posted March 19, 2022 On 2/18/2022 at 9:07 AM, m1279 said: I've been having a terrible time the last few months with really bad adrenaline surges at night. Often during the day too but it's 100x worse at night. I'm surviving on 0-3 hours sleep. The sleeping tablets I was taking and were just about keeping me sane have stopped working so I'm in a really bad place. I've literally tried every natural method to control these surges but I can't seem to get a handle on them so I'm exploring medication options. I've been diagnosed with CFS/ME but I've had many symptoms of POTS for years (it's just never been explored due to unhelpful doctors to be honest) and I'm beginning to feel it could be hyper-pots due to the symptoms I'm experiencing. I've read that clonadine can help a lot but I've just spoken to my GP who will not prescribe it for the reasons I am asking for it which I can understand but it's really frustrating. I've been prescribed a beta-blocker which I'm hoping might help. Has anyone got any experience with this? How do you treat it and is it possible to get a clonadine prescription in the UK? 0 Comments Years ago I had the same issue for several years. 2 hours was a good night. I got through it by listening to my radio with an ear bud. I didn’t put it in my ear just turned it up a bit and nestled it in my pillow. I would listen to NPR. It at least relaxed me a bit and I would feel calmer. Sometimes I would fall asleep. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 19, 2022 Report Share Posted March 19, 2022 9 hours ago, angelloz said: I got through it by listening to my radio I was thinking i was the only one that did this. I listen to old time radio shows seems to help. Haha sometimes i even dream that i am one of the characters in the episode. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2022 Report Share Posted March 21, 2022 Adrenalin surges are a common feature of POTS - not just specific to presentations like 'hyper' POTS. A decade ago a neurologist suggested that they were caused by reflex activation of beta receptors via release of epinephrine in an ineffectual attempt to regulate circulatory control but now days Im not so sure as a recent episode I had gave me outrageous blood pressures including one measurement of 210/120 lying down. Since arterial blood pressure is controlled more by the effects of norepinephrine at alpha 1 adrenergic receptors and my HR was elevated but not as pronounced I realised it could really only be explained by an excessive vasocontrictive response. This is despite the fact that I have relied on midodrine for 12 years normally to function. My neurologist suggested low dose clonidine (1/4 or 1/2 tab) and the results normalised my BP and calmed my mind/stopped the hyperadrenergic feeling. To my surprise it has not really worsened orthostatic intolerance at all athough larger doses can make me lethargic. I think from my experience with POTS it can change over time and isnt a static situation. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 21, 2022 Report Share Posted March 21, 2022 I’d love to try a little clonidine. I was up all night last night - relaxed and sleepy but heart so uncomfortable despite lots of beta blocker. No one will let me use clonidine and I don’t know why. My BP is low, but they give me other stuff that lowers it, and I’d be in bed. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 22, 2022 Report Share Posted March 22, 2022 23 hours ago, ramakentesh said: A decade ago a neurologist suggested that they were caused by reflex activation of beta receptors via release of epinephrine in an ineffectual attempt to regulate circulatory control but now days Im not so sure as a recent episode I had gave me outrageous blood pressures including one measurement of 210/120 lying down. Since arterial blood pressure is controlled more by the effects of norepinephrine at alpha 1 adrenergic receptors and my HR was elevated but not as pronounced I realised it could really only be explained by an excessive vasocontrictive response. I have hyperPOTS and what happens is that upon a sudden drop in BP the SNS overcompensates and dumps out adrenaline, which in turn causes exsessive vasoconstriction and the BP and HR go up significantly. This sudden stop of cerebral circulation causes seizures in me. I also have NCS, which means the SNS does NOT kick in and my HR and BP plummet suddenly, causing a faint. @RecipeForDisaster I had a terrible experience with clonidine. I only took it for about a week but was highly sedated the whole time and on day 5 developed rebound hypertension during the night - I felt like I was dying. It is helpful for many people but beware of the side effects Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 22, 2022 Report Share Posted March 22, 2022 Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 24, 2022 Report Share Posted March 24, 2022 On 3/22/2022 at 6:34 AM, RecipeForDisaster said: Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed. I didn't have a good time with clonidine either because I felt extremely vasodilated and actually got insomnia because of it, but I found that a very tiny dose of naproxen cerebrally vasodilates and give me a similar effect. It just takes time to find the right dose, I only take a tiny piece but it does help and doesn't cause such insomnia and tiredness just feel more relaxed and helps with headaches. It's a NSAI and some constrict but the naproxen dilates. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 24, 2022 Report Share Posted March 24, 2022 Ugh, I’m super allergic to NSAIDs. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2022 Report Share Posted April 4, 2022 On 3/22/2022 at 9:19 PM, Pistol said: I have hyperPOTS and what happens is that upon a sudden drop in BP the SNS overcompensates and dumps out adrenaline, which in turn causes excessive vasoconstriction and the BP and HR go up significantly. This sudden stop of cerebral circulation causes seizures in me. I also have NCS, which means the SNS does NOT kick in and my HR and BP plummet suddenly, causing a faint. @RecipeForDisaster I had a terrible experience with clonidine. I only took it for about a week but was highly sedated the whole time and on day 5 developed rebound hypertension during the night - I felt like I was dying. It is helpful for many people but beware of the side effects The excessive sympathetic response to standing hypothesis is interesting because vesicles in sympathetic synapses rely heavily on reuptake for norepinephrine stores - meaning if there was a lack of transporter the vesicle would be completely depleted of norepinphrine without an increase to tyrosine hydroxylase. This would potentially result in hypotension. This is further evidenced by NET inhibition in heathy people which increases standing heart rate, impaited baroreflex sensitivity but not a hyperadrenergic state. The angiotensin ii low flow crowd did have a true hyperadrenergic response yet vasodilators made them feel worse. I really beleive that proper hyperadrenergic POTS - if if is more than a presentation - is probably mediated by central processes Quote Link to comment Share on other sites More sharing options...
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