iheartcats Posted January 4, 2009 Report Share Posted January 4, 2009 My POTS is really frustrating me. I've had it a year now with no real improvement. My only improvement is I know I have a disease and am not an insane hypochondriac!I'm currently on the salt/fluid diet and take Midodrine 1-3 times daily. My doctor is having me start Mestinon this month, but I know it's hit or miss. I'm giving it a try, though.Is anyone on Cymbalta? I've read it could be helpful and is used for Fibro. I also came across this;SNRIs are a class of medications that are thought to relieve symptoms by affecting the levels of serotonin and norepinephrine in the brain and in the spinal cord. By reducing the absorption of serotonin and norepinephrine into cells, SNRIs increase the levels of these two substances.For anyone who has used this, what other meds are you on and did you have any side effects? I am very hesitant about medication, always have been, so having to keep taking new medicines to treat myself is very stressful. But after a year of suffering I'm starting to be more willing to try things.I also feel I'm slightly depressed from POTS - just having a chronic disease and the havoc it's threw into my daily life, losing friends, not having energy to do what I want, etc. is really getting me down.I don't know if Cymbalta is worth bringing up with my PCP.Thanks for listening/any help! Quote Link to comment Share on other sites More sharing options...
flop Posted January 4, 2009 Report Share Posted January 4, 2009 SSRIs and SNRIs help a lot of us. I remember that some members had to try a few different options to find one that suited them. From my own experience I do well on paroxetine (paxil / seroxat) but I would advise starting on a really small dose as I felt really unwell when I took my first tablet (20mg) then gradually increase the dose. My sister (who doesn't have dysautonomia) took fluoxetine last year and I got her to start on a really small dose too - she felt no side effects at all and within 3 days was taking the full dose prescribed.Flop Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 4, 2009 Report Share Posted January 4, 2009 Have you and your doc talked about florinef? For me it seems to work in a complementary way with midodrine and has made a big difference in how I feel. I'm on a small dose- .075 and have been since the summer. I still flare around my period, but it is otherwise a night and day difference in how I feel. Everyone is different, but I find it really stabilizes me. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 5, 2009 Report Share Posted January 5, 2009 Are you trying Cymbalta for POTS or for pain? I think some people here take it for pain, but SSRIs (not SNRIs) are shown to help POTS. I think other good things to try are beta blockers and florinef. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 5, 2009 Report Share Posted January 5, 2009 yeah i can understand it getting you down - its hard not to really with any chronic illness and I read that some patients actually experience depression as a result of POTS. Mestinon is a promising treatment and Ive read that a lot of people improve on it.Ive also read that SSRIs can be helpful and for some people SNRIs can be helpful despite the obvious paradox of increasing already elevated NE levels or impaired reuptake. There are other medications being trialled in Australia and the states next year - Droxydopa in particular that show promise in combating venous pooling in the stomach and legs. Licorice can also be helpful - it used to be my god send but now, typically it no longer works...they are all worth a try but the thing that stopped me trialling an SSRI was the long period of adjustment side effects. Im alreayd side-effected out...Also there is a study that demonstrated that mice that had their Norepinephrine transporter switched off showed hypersensitivity to psychoactive substances. the NET has been implicated in POTS and many of us also demonstrate hypersensitivity. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted January 5, 2009 Author Report Share Posted January 5, 2009 I don't really have a lot of pain - on occasion but nothing I can't deal with, fortunately.I think I'll see how the Mestinon goes, and just compile all this info for my Grubb visit in couple months. I'll be on Midodrine, Mestinon, Salt, & Fluids by his visit for POTS.I can work with what I have for a couple months, I think. And I'm going to try to give Mestinon a good month to kick in and work. I know it can cause stomach upset for a few weeks in some people, but those can subside.Thanks for everyone's input. It's interesting to see how the medication varies so much for the 'same disease' - shows that POTS/OI/Dys sure likes to work at different levels for different causes. Quote Link to comment Share on other sites More sharing options...
Megan Posted January 6, 2009 Report Share Posted January 6, 2009 In answer to your original question, I was on Cymbalta and had a terrible reaction to it, but I didn't notice right away. We're all different of course, so if you do end up deciding to try it, just watch yourself. Good luck with the Mestinon. Eating before you take it can help with the stomach upset.Meg Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 6, 2009 Report Share Posted January 6, 2009 Many people with POTS do find Cymbalta helpful. You could try a search to locate past topics on the subject.I've tried SSRIs and SNRIs in the past, but they've never worked for me. I'm going to be trying Cymbalta soon, though. I'm running out of meds to try, so I might as well give it a go. I just saw Beverly today and she prescribed Cymbalta. She said that Cymbalta is different because it is an SSNRI (combo SSRI and SNRI). Some patients do better with that than with just an SSRI or just an SNRI. Dr. Grubb and Beverly have had a lot of success using the med with their patients. Obviously there is no magic pill for everyone. It takes time to find the right treatment/med combo for each individual. I hope you can find something that works for you.Rachel Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 8, 2009 Report Share Posted January 8, 2009 Hi,I too had thought that I few people here on the board had good results with Cymbalta. I recently started Cymbalta, I guess about 2-3 months ago now. I started tapering off the Wellbutrin slow (no longer taking) and weaned to a smaller dose of Zoloft. Then added in the Cymbalta. Suprisingly for me it has been about the med with the least amount of side effects. There was a month or so where whenever I came within 6 hrs of the next dose I started getting a migraine. But this is also right after weaning of/down on the other meds. I haven't had that problem now in weeks. I do feel it has helped some. Mainly in the ways it is hard to describe... better endurance, less dizziness, better heat intolerance (saw a big help here with being able to drink hot beverages again). I also have felt like I have little spurts of energy that I didn't have before. One negative is that I do think that it has raised my resting HR, so I do still get high HRs frequently.Cymbalta is also helpful for neuropathic pain, migraines (maybe), ANS stuff (HR/BP regulation), and cognitive issues.I do think that it can be helpful for some people.I should add that the diagnosis that they originally wanted to try Cymbalta for was the ADHD. It has helped some, more than others I have tried, but there is still a long road ahead there...Hope that helps!!! Quote Link to comment Share on other sites More sharing options...
iheartcats Posted January 8, 2009 Author Report Share Posted January 8, 2009 I'm definitely talking to Grubb about Cymbalta - from what I hear I think it might be one worth trying. Is it something you have to wean off of if it doesn't work? And is it safe to take with Mestinon and a Beta Blocker? Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 8, 2009 Report Share Posted January 8, 2009 Hi, I take it with a BB, not sure about Mestinon. Grubb's NP Bev was the one that put me on it, so I am sure they would be willing to discuss it with you. I am on the lowest dose and it is in a do not break open type capsule, so as far as weaning about all you can do is take it every other day I think. Quote Link to comment Share on other sites More sharing options...
desiree942 Posted January 14, 2009 Report Share Posted January 14, 2009 I have had excellent results with cymbalta as prescribed by dr.grubb. It really stabalized my POTS symptoms and got me functioning pretty close to normal. I still have some orthostatic intolerance issues but I really am much better than I was 2 years ago! Quote Link to comment Share on other sites More sharing options...
iheartcats Posted January 14, 2009 Author Report Share Posted January 14, 2009 I have had excellent results with cymbalta as prescribed by dr.grubb. It really stabalized my POTS symptoms and got me functioning pretty close to normal. I still have some orthostatic intolerance issues but I really am much better than I was 2 years ago!I can't wait to see Grubb. I will talk with him about this - I don't think it can hurt to try. The worst is it won't work/cause side effects and I stop. Not like that hasn't happened before! Quote Link to comment Share on other sites More sharing options...
momdi Posted January 14, 2009 Report Share Posted January 14, 2009 I have had excellent results with cymbalta as prescribed by dr.grubb. It really stabalized my POTS symptoms and got me functioning pretty close to normal. I still have some orthostatic intolerance issues but I really am much better than I was 2 years ago!Could I ask what type of POTS you have? One of Mike's consultant docs recommended Effexor - I guess similar to Cymbalta - but he's been reluctant to try it. His main POTS doc has no experience with it, so no help there. Any comments anyone on Cymbalta vs Effexor? Quote Link to comment Share on other sites More sharing options...
njfainter42 Posted January 15, 2009 Report Share Posted January 15, 2009 I've been doing great on just 20mg cymbalta...miraculously stable for about 3 years...never had to increase the dose. Cymbalta has been a miracle drug for me. I started by opening the capsules and worked my way up to 20mg because I am sensitive to meds. Cymbalta is all I take with my hypothyroid meds. I rarely faint or have the exhausted shaky episodes and I have both NCS and POTS. I take my pill each morn. Problem is I am considering pregnancy and I don't think it's OK with that so I will be in trouble then. By the way, I was fainting regularly with my ovulations and sometimes at other times too. I tried midodrine but got headaches and it brought my BP way too high and caused it to jump around also. Salt and liquid loading did not work for me either. Quote Link to comment Share on other sites More sharing options...
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