abbyw Posted April 12, 2012 Report Share Posted April 12, 2012 Hi,I have been pretty stable on an SSRI for around 3 months now. Happy to say that I have no more dizziness, and no more anxiety like symptoms. I do tire very easily, but that's about it. I go for two 20 minute walks a day, and I am functioning pretty well. The SSRI causes sleep issues for me, and I think that a lot of my fatigue may be attributed to that. My question for all of you is: Do I say that the SSRI has helped me feel well and keep taking it forever, grateful that I have my life back to a large degree, or do I try to wean myself off in the hopes that I will stay better?Thanks for the input!Abby Quote Link to comment Share on other sites More sharing options...
corina Posted April 12, 2012 Report Share Posted April 12, 2012 Hi Abby,over the years I've tried several times to wean off of the ssri's and didn't succeed. I could come off of them (really slowly) but my hr came back up again (on standing and exercizing) to a point where I needed to decide to get on them again. Getting back on them it took about another 8 weeks for the ssri's to kick in again which meant that I was in trouble for a few months. I think I've tried 2 or 3 times and now decided to not wean off anymore.This is what goes for me but we are all different so it doesn't necessarily have to be like this for you! Quote Link to comment Share on other sites More sharing options...
corina Posted April 12, 2012 Report Share Posted April 12, 2012 oh btw Abby, I noticed you posted twice so I deleted the other post. Just that you know! Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted April 12, 2012 Report Share Posted April 12, 2012 Abby-- This is just my own personal experience but I never had any success with any of the ssri's that I tried. However, the latest one I was on, lexapro, did make me feel better for a few short days and then I was right back to square one.Within thirty minutes of taking the lexapro I was vomiting and having horrible adrenaline surges, and I was also severely depressed. However, so many had told me to give it the 6-8 weeks to work and I was almost there do I tried to hold out but I just couldn't. So, I visited my internist and explained to him what was going on and he recommended stopping the lexapro and also stopping the beta blocker (which can cause depression). Within a day of stopping both of those medications I feel more like myself than I have in a LONG time!!! However, stopping the lexapro cold turkey resulted in some horrible headaches but that was the only withdrawal I had, thankfully. My heart rate without the BB isn't as controlled but I have a very very mild form of POTS in comparison to many on DINET. So, I am searching for natural ways of treating it. So far my husband and I have discovered some wonderful theories on a group of supplements called the foundational four. This involves taking a whole food vitamin, probiotics, digestive enzymes, and cod liver oil. (message me if you would like more information) I will also continue to increase my fluids and salt intake and exercise. I know many need medications indefinitely and I am thankful that those medications are available to them but I am also thankful that there are natural ways of treating POTS as well!! I will be praying for you to make the right decision for you!!Mandy Quote Link to comment Share on other sites More sharing options...
abbyw Posted April 12, 2012 Author Report Share Posted April 12, 2012 Thanks for your replies.Corina, I realized that I must have clicked twice when posting, but I didn't know how to delete one of them. Thanks for removing the extra one.Mandy, I would be interested in knowing if the natural ways have helped you enough that you feel OK without the meds. Our situations are so different, because the SSRI has helped me so much, but I would love to be off of them nonetheless.Thanks,Abby Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted April 12, 2012 Report Share Posted April 12, 2012 Abby-- I will message you in a few weeks and let you know how I am feeling Quote Link to comment Share on other sites More sharing options...
LMG Posted April 12, 2012 Report Share Posted April 12, 2012 Abby,I am new to the forum and have had severe POTS for several months. Started Prozac a few weeks ago and think I feel a little better. I went very slowly and took 6 weeks to get to 10 mg which I have been at for 5 weeks. What SSRI are you taking and how long did it take for you to get to the point where you could take walks etc? I was bedridden and still am a lot but more housebound now and wondering if the SSRI can get me out of this hole.Anyone else with input please, it is very welcome. Lauren Quote Link to comment Share on other sites More sharing options...
yogini Posted April 12, 2012 Report Share Posted April 12, 2012 In my nonmedical opinion, 3 months is way too soon to try weaning off. For those who have dysautonomia and are prone to recovery, it can take years. It is really hard to find anything that works to treat POTS and if you have found something that is great. My advice would be to use your improvement to enjoy life, be active and exercise. If you can build up your strength, that can facilitate recovery. if SSRI is interfering with your sleep, maybe you can talk to your dr about switching the time of day, etc.Before I tried florinef, betas, midodrine and numerous natural trmts. Many things worked for me, but none as well as Paxil. I have been taking SSRIs for about 4 yrs now. Last year I went down from 10mg to 20mg. Last August, I started a full time in office job for the first time since getting POTS. I went back to 20 mg Paxil earlier this year. I feel better than I have in years and almost back to my normal self. I'd prefer not being on meds, but to me it is worth the tradeoff. If you do decide to wean off, go slow. I did 1/8 pill every month or so. Quote Link to comment Share on other sites More sharing options...
LMG Posted April 12, 2012 Report Share Posted April 12, 2012 Yogini,That is wonderful news. It seems recovery can take a long time and congratulations on your getting there. I am on Prozac and wonder if it works as well as Paxil. Have been on 10 mg for 6 weeks. See some changes but still weak, in bed a lot and still have migraines etc. How long did it take before you noticed that it was a big help? Quote Link to comment Share on other sites More sharing options...
yogini Posted April 13, 2012 Report Share Posted April 13, 2012 Thanks. I would say I started feeling better within a couple weeks and evened out at a couple of months. When i started i was also on betas and felt better once i was able to get off them. I started with 10 mg Paxil and asked to go to 20 b/c I found it was helping. I believe 20 is still a low dose.I don't consider myself recovered b/c I am dependent on meds and still have episodes/ rough periods. But am highly functional and increasingly so as time goes on... Fingers xed! Quote Link to comment Share on other sites More sharing options...
Anoj Posted April 13, 2012 Report Share Posted April 13, 2012 thanks for asking this question, it's something i've wondered myself. i do not want to be on zoloft forever. i've gained SO MUCH weight on it. that's the main reason. i'm not going to attempt to get off of it until my body feels much more stable. Quote Link to comment Share on other sites More sharing options...
abbyw Posted April 15, 2012 Author Report Share Posted April 15, 2012 Hi,Sorry for the long delay. Thanks for all of your feedback.Lauren, I am taking Lexapro - 7.5mg which is pretty low. It took me around 8 weeks on that dose to feel "normal". I definitely feel better on the days that I make myself go out for a walk in the morning. Even just a few minutes.I am also thinking that 3 months is too short. I guess I just want to believe that this was a brief virus that just needed a little help and now it will all go away. Wishful thinking.I think I will give myself some more time before trying to change anything.Thanks for all the feedback,Abby Quote Link to comment Share on other sites More sharing options...
sarahm Posted May 14, 2012 Report Share Posted May 14, 2012 I was on Celexa for about 9 months. The dr that prescribed it said it would help with the fatigue and sleep issues, but I later found out he just thought I was crazy. Now I have a POTS expert as my Dr. and he took me off it. I had to wean off, and I have not taken any for only 2 days. He said unless my fatigue and sleep issues are related to depression, it was useless to take it. I am definitely not depressed, although I have had my share of rough days. I believe all my improvements were unrelated to the drug. I also am pretty functional now, taking walks, cooking, etc. But I believe most of that was due to exercise and time, not the drug. Also I was getting halucinations at night from the Celexa, so I was on a low dose 10mg. I am curious to see if being off will actually help with my sleep. I wouldn't rush anything if you think it is helping. I guess it can take a while to see an effect. And if you feel depressed I would definitely give it some time. It took me a while to feel comfortable going off the drug, mostly because I wasn't sure if it was the cause of my recovery or not. And I think its really impossible to tell. Good luck. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted May 14, 2012 Report Share Posted May 14, 2012 Taking an SSRI for POTS has nothing to do with depression, although some of us do have it secondary. It basically re routes the nervous system. I took lexapro for a year and slowly weaned off of it over a six month period. The only reason i was able to get off was because I started smoking again. If you do get off be prepared for your POTS symptoms to make a come back. Quote Link to comment Share on other sites More sharing options...
lissy Posted May 15, 2012 Report Share Posted May 15, 2012 I took lexapro 8 1/2 years ago before I knew what was wrong with me I went from only being able to lay on the couch and dizziness consistently to living a completely normal life with almost no symptoms except heat intolerance and standing still for too long I had what seemed to be a complete remission of my mysterious health problems for 4 years and in 3 of those years I had 3 children. I went from 10 to 20 mg and stopped in 3 months with no with-drawl, the only side-effects I had total was at day 3 euphoria that lasted maybe a day.Probally wondering why I haven't started again, I developed a med phobia due to dealing with incompetent doctors I know if I could get over this fear I have a good chance for recovery I just hope I didn't wait to long...I have heard the longer you stay on SSRI's the harder it is to get off, I suggest talking to your doctor about your options if you need to take at a different time or do something with the dosage or add something to it. Maybe you can just stop if you feel you are better and return to it if needed, All the studies I have read are researched on a short time frame they are not intended to take for years even though most are staying on them due to taking them so long they cannot tolerate the with-drawls. I did not wean I just stopped and honestly had no issues .Good Luck. Quote Link to comment Share on other sites More sharing options...
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