beastwiththeleast Posted October 25, 2020 Report Share Posted October 25, 2020 Hey there; Under a tentative chronic fatigue diagnosis and after almost 3 years of being told I'm looking for attention, my doctors have put me on two antidepressants, both with drowsiness/tiredness/fatigue as a side effect (amitriptyline (endep) and agomelatine (valdoxan)). This seems strange to me, since the issue I talk about the most is that I'm always tired and feel horrendous (because I'm always tired). I understand that the illnesses discussed here often present with fatigue and wanted to ask the same: Does anyone else have experience with this? Am I nuts for thinking that this is weird? I've been on these for months and only feel worse (which is normal for me). Are people with CFS/ME/POTS usually put on medication other than antidepressants? Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 26, 2020 Report Share Posted October 26, 2020 @beastwiththeleast - no, personally I have never heard of those ( very powerful ) medications being used for POTS or CFS. I am wondering if they have diagnosed you with major depressive disorder instead? That is what these meds are often used for. However - antidepressants ARE on the list of medications for CFS : Quote: There is no cure for CFS; however, the following treatments may be considered to help relieve symptoms: Sleeping medications Stimulants Analgesics Antidepressants Other medications. Quote Link to comment Share on other sites More sharing options...
Sushi Posted October 26, 2020 Report Share Posted October 26, 2020 17 hours ago, beastwiththeleast said: understand that the illnesses discussed here often present with fatigue and wanted to ask the same: Does anyone else have experience with this? Am I nuts for thinking that this is weird? I've been on these for months and only feel worse (which is normal for me). Are people with CFS/ME/POTS usually put on medication other than antidepressants? I have a diagnosis of CFS as well as dysautonomia and my autonomic specialist did put me on Strattera and Cymbalta for a period but not because of depression, rather to help regulate neurotransmitters that affected orthostatic intolerance. As @Pistolmentioned, check what diagnoses you have been given. And yes, CFS patients are often given other medications though there is no one medication that is helpful for all. I’ve never heard of any one medication that was helpful for more than half of patients, so specialists (there are very few) try patients on different medications and other protocols (like careful pacing) looking for a positive response. An example of one of the medications that is often tried is low dose (3 - 4 mg) naltrexone. Many patients are initially given a CFS diagnosis but later it is found that something else is going on and sometimes that something else is more treatable. Best wishes. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted October 26, 2020 Report Share Posted October 26, 2020 2 hours ago, Sushi said: Many patients are initially given a CFS diagnosis but later it is found that something else is going on This was me, I was given a ME/CFS diagnosis 20 years ago , fibromyalgia 2 years after that. I was given a vast variety of SSRIs and SNRIs none of which helped and referred for CBT and graded exercise neither of which led to any improvements and I have up on doctors. Fast forward to 2016 and after reading about POTS myself and begging a consultant cardiologist for a TTT I finally get a diagnosis of POTS and dysautonomia and then I find out I have hypermobile Ehler Danlos Syndrome which explained a lot! Fatigue has always been a very prominent symptom for me - I know I only started to improve when I broke the cycle of doing too much and then spending the next week recovering before doing far too much again! Try to find a baseline level that you can manage and stick to it. I also found the drug Modfinil helped me have enough energy to start to exercise. I started at a very low level of only being able to exercise in bed for 5 minutes at a time - I can now manage to do an hour of physio type exercise plus a 10 minute walk plus 10-15 minutes recumbent cycling every day. I have tried amitriptyline at a low dose (max was 75mg) for pain - it raised my resting heart rate and made POTS worse so I stopped but my Mum gets on very well with it and finds it helps her sleep if she takes it in the evenings. Quote Link to comment Share on other sites More sharing options...
beastwiththeleast Posted October 27, 2020 Author Report Share Posted October 27, 2020 Hey there, Thank you folks for sharing your experiences My doctors have always been evasive about my diagnoses (they talk to my guardian about it, but seldom to me) but I know that they suspect depression (despite my insistence otherwise - I'm not depressed, just exhausted (and tired of not being listened to!)). We've tried about every d*** antidepressant I can think of (I've been on Cymbalta, too); the problem is that I always feel worse after going on them, and don't get better after going off them. My doctors are always tentative to diagnose chronic fatigue syndrome or anything related and often refuse to give me access to more specific tests (tilt table, neurological) that would clear it up. Our general practitioner of 6 years has completely ghosted me (but not my family). We didn't think I was being totally intolerable, but I guess she didn't think I was worth the trouble..? Quote Link to comment Share on other sites More sharing options...
Ashc Posted November 6, 2020 Report Share Posted November 6, 2020 Sleeping medications help but you can be too dependent on it. Melatonin, however, has less side effects? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted November 16, 2020 Report Share Posted November 16, 2020 On 10/25/2020 at 6:45 PM, beastwiththeleast said: Hey there; Under a tentative chronic fatigue diagnosis and after almost 3 years of being told I'm looking for attention, my doctors have put me on two antidepressants, both with drowsiness/tiredness/fatigue as a side effect (amitriptyline (endep) and agomelatine (valdoxan)). This seems strange to me, since the issue I talk about the most is that I'm always tired and feel horrendous (because I'm always tired). I understand that the illnesses discussed here often present with fatigue and wanted to ask the same: Does anyone else have experience with this? Am I nuts for thinking that this is weird? I've been on these for months and only feel worse (which is normal for me). Are people with CFS/ME/POTS usually put on medication other than antidepressants? They've been drugging me with antidepressants and antipsychotics since I started complaining about my symptoms at age 17. ME is not treated with those meds. And on the contrary, as someone mis-diagnosed with ME, I think the majority of us are dealing with very severe and symptomatic forms of dysautonomia. Amitryiptyline can be used for Interstitial Cystitis and pain but causes terrible weight gain and it a downer for sure sedating. I don't know what valdoxin is. My cancer doctor told me I was on so many psych meds that it was like wearing 50 blankets so I weaned myself off most including the difficult Seroquel. ME is some weird form of the Bodies' cells not being able to produce energy. There is some sort of treatment they do for that at the Univ. of Miami but I can't remember. I think the goal overall is to reduce pro inflammatory cytokines, check for infections and treat as needed, immunovir is often used to help the immune system, Low dose naltrexone is one used a lot for regulating cytokines and giving energy if you don't get the insomnia. Here's an article about Dr. Klimas, she's one of the researchers I've seen and respect. https://www.prohealth.com/library/university-of-miami-me-cfs-researcher-nancy-klimas-md-explains-complexity-of-chronic-fatigue-syndrome-in-terms-that-anybody-can-understand-24397 Oh boy I'm getting tired. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted November 16, 2020 Report Share Posted November 16, 2020 And yes I was mis diagnosed. I actually have a very rare form of chronic blood cancer that only 200,000 people in the US have. I think ME is over diagnosed and there isn't enough investigation into what could really be going on. I have Essential Thrombocythemia jak2 positive. Quote Link to comment Share on other sites More sharing options...
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