POTLUCK Posted October 6, 2014 Author Report Share Posted October 6, 2014 My sleep is terrible. I am not able to sleep in the morning at all. I have trouble falling asleep, waking up and falling back to sleep, and waking up to early. I tried going without sleep one night as I read that is a treatment for depression. The next day was one of the worst days of my life and I will not be doing that again.Thank you again for the support. Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 6, 2014 Report Share Posted October 6, 2014 You're welcome. I get manicy on antidepressants so I am no help in that area. They made me more anxious and unable to sleep. Luckily, I have restless leg syndrome and the Gabapentin I take for that also tires me out at night. It does sound like you're in a bit of a quandary re the meds. I have been there. Just know you are not alone. Prayers for you Potluck! Keep in touch with us please! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 7, 2014 Author Report Share Posted October 7, 2014 I am on Gabapentin 900mg HS also for RLS and sleep. It is supposed to improve sleep architecture. Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 7, 2014 Report Share Posted October 7, 2014 Oh ok. I take mine at about 6 in the evening and it seems to start kicking in around 11 so that hopefully I am asleep before midnight. It also seems it used to work better than it used to. Harrumph. Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 7, 2014 Report Share Posted October 7, 2014 I meant it used to work better than it does now. Lol. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 10, 2014 Report Share Posted October 10, 2014 sorry to hear about this. SNRIs are controversial but one of the most hyper patients on these forums reported success with SNRIs when it would be presumed the opposite would be the case. MAOIs seem better for depression in CFS i remember reading. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 10, 2014 Report Share Posted October 10, 2014 sorry just read through the whole thread. I wonder if the depression is actually related to the POTS. As in being caused by it. Its a tough one man. Quote Link to comment Share on other sites More sharing options...
blueskies Posted October 10, 2014 Report Share Posted October 10, 2014 sorry just read through the whole thread. I wonder if the depression is actually related to the POTS. As in being caused by it. Its a tough one man.[/quotehi ramakenteshI wonder about this too in my case too. Anxiety is often a part of POTS so why not depression? Both are often present together from my understanding. They have such a long way to go in the understanding of why either/both occur. I am grateful to have a psych doc that will read reports from my other specialists and take them into consideratioBlue Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 10, 2014 Report Share Posted October 10, 2014 I haven't suffered from depression but I have taken Zoloft, Lexapro, cymbalta, and Wellbutrin (not together)I have Hyperpots. Wellbutrin was a nightmare for me. Mayo clinic didn't prescribe it. I got it from another doctor. Cymbalta was ok- I consider it safe. It was prescribed for fibro pain.Lexapro didn't help my pots but no ill effects. The Zoloft was pre diagnosis. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 11, 2014 Author Report Share Posted October 11, 2014 Rama- This is a huge point in my mind you bring up. My POTS prior to the MAOI always followed a diurnal variation with much higher HR's and much worse symptoms in the morning, then slowly tapering to evening when HR was nearly a normal persons, and symptoms were nearly normal. My depression has been agonizing but has almost always involved initial rapid spiraling anxiety, and almost always in the morning, most likely on first waking. However the depression goes away in the evening (about 5-6PM) completely, and when I am unable to sleep during the night for hours I find I am not at all depressed. I have been journaling it. In fact one night I tried staying up all night as this is a recommended treatment for depression believe it or not. I felt great all night, not at all depressed till morning, then became extremely depressed and had one of the worst days of my life.The MAOI has changed the time of the heart rates and the symptoms to a very strange and not entirely clear pattern to me. Low HR's do not always match decreased symptoms as they always did. ( The exception to this rule has been Propranolol which at higher doses has always made my HR's lower but my head worse-dysphoric, lightheaded feel.) Anyways, now it is all unclear with the MAOI. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 11, 2014 Author Report Share Posted October 11, 2014 My apologies as looking back I realize I have repeated much of what I said earlier in my own thread in this most recent post.I dropped the 9mg to 6mg patch 24 hours ago, and am hopeful to be making a move in any direction but stuck. There is a risk of returning depression but as one doctor noted to me the 9mg may have 'jump started" the depression and by going down you can decrease the POTS. Feeling positive about this may help improve the depression and decrease the anxiety of the POTS plus I ran today one of the few times since depression so am hoping this is a positive move. Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 11, 2014 Report Share Posted October 11, 2014 I just read something interesting about hypo perfusion and it stated that it can cause depression/anxiety. I was thinking about you because in the mornings, we have been without water for quite some time. I wondered If when you wake up and you are up for awhile, are you drinking water then? Just a thought. I am so glad that things may be looking up anyway for you re the medication change and your run today! Let's pray that this is an upward trend! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 11, 2014 Report Share Posted October 11, 2014 Yes hypoperfusion can cause depression and anxiety as can reduced cerebral sodium reception and co2 changes in pots..I was assume that depression would not normally follow a similar pattern to pots symptoms and resolve in the evening each day.Consider that pots and all oi conditions involve neurotransmitter(s) that are also involved in central mood and cognitive regulation.Consider also that if a pots patient had reduced ne reception the symptoms would be similar to low norepinephrine rather than high. medications that deplete norepinephrine in pre synaptic vesicles cause severe depression.Can you tolerate caffeine? As a one off it would be hypothetically interesting to see how your mood responded to a mild stimulant. My guess is it may help. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 12, 2014 Report Share Posted October 12, 2014 Rama mentioned caffeine- I do tolerate it and find it helpful. My doctor suggested a caffeine pill like no-doze to have a consistent dosage and to negate the diuretic effects of coffee. I still choose to drink coffee in the am and tea around noon but I thought this was an excellent suggestion.You can also cut caffein pills pretty easily if a whole pill is too much. I've struggled with crushing fatigue and also tried Provigil. Caffeine is nice for me because it's not in my system very long. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 13, 2014 Author Report Share Posted October 13, 2014 I have 20 ounces of coffee every morning (that's two cups for me,) and always have, including with POTS and including while depressed. Prior to my depression it improved my mood slightly as coffee does normally. Since my depression I would say it still may improve my mood somewhat but does not get rid of my extreme depression to any huge degree.Not sure what that suggests here.I do not know for certain that I have "Hyperadenergic POTS" (meaning high standing NE), as I never had standing NE tested. Cardio felt it was hyperadrenergic POTS when he did tilt. Blood pressures are high and remain elevated lying and standing with my POTS and I think, but am not certain, that is why he felt it was Hyperadrenergic. I do not have any obvious signs of pooling in my lower extremities. My seated NE is usually normal 259-368 pg/ml and seated Epi is always slightly high 78-98 pg/ml ( measured on low dose propranolol)I never realized that people with Hyperadrenergic POTS had any trouble with consuming caffeine. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 14, 2014 Author Report Share Posted October 14, 2014 I have the POTS on the Emsam 9mg mentioned above back. If not clarified well above this POTS is a nightmare!!!!! I am completely nonfunctional as large stressors amplify POTS symptoms intensely on Emsam causing a "fear" reaction or at times an awful feeling where I cannot think. Heart rates are all over the place and make no sense to me.The 6mg patch brought the depression back very quickly and I am back on the 9mg and the depression is gone, also extremely quickly- 4 days for the whole thing. Which seems strange in itself for an irreversible MAOI.Technically I did have a standing NE (someone pulled up a poll I did on this a couple years ago today.) It was 8000+ and appears ( after a crazy Pheo workup) that it was a lab error. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 14, 2014 Author Report Share Posted October 14, 2014 These POTS symptoms on MAOI are intolerable for any extended period of time but not as bad as agonizing depression.Any thoughts on where to go. I am in a catch 22 and do not know how to get out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Trying to go off MAOI and try other antidepressants does not sound possible as it will take an unknown period of time.with horrible depression. Quote Link to comment Share on other sites More sharing options...
corina Posted October 14, 2014 Report Share Posted October 14, 2014 Potluck, I have nothing wise to add just wanted to let you know that I'm very sorry and hope things will get better for you really soon Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 18, 2014 Author Report Share Posted October 18, 2014 Thank you Corina Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 19, 2014 Report Share Posted October 19, 2014 Hi Potluck. I am so sorry you are going through this. It does sound so physiological due to the cyclical nature daily. So, I have been asking myself what do I do when I am at the bottom of the hill when on this apparent roller coaster? I am praying on this. How do we not 'derail' when something is happening that is so difficult. (symptom flares, being dismissed, anxiety, etc.). I will pray for you as well. I think we need to hang on to the hope at all costs when we are down. I know that for me, when I feel horrible, I forget what it feels like to feel well. When I am doing fairly well, I forget what it felt like to feel so horrible. Just know that it will get better. You were doing so much better before and you will be there again. Please know that feel for you and I understand. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted January 25, 2015 Author Report Share Posted January 25, 2015 Was ready to check in hospital inpatient to try and go off patch. Doctor approved admission. Insurance OK'd. Doctor refused to come in on a Friday night. RN friend who brought me suggested go back on 60mg BID Propranol at hospital check in literally. I went home and did it the next day. It fixed my sleep problem after many months in a night. Then I pulled 9mg patch straight out. Never looked back. Literature said due to enzyme turnover it would self taper. Depression came back but no where near as bad, and fear was gone in 1-2 weeks. I am back to me!!!!!!!! Lost job, nightmare but I am over the worst!!!!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 25, 2015 Report Share Posted January 25, 2015 I'm so glad you're doing better! That's great news! Quote Link to comment Share on other sites More sharing options...
corina Posted January 25, 2015 Report Share Posted January 25, 2015 I'm so sorry about the job loss potluck but happy to know you're doing better! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted January 26, 2015 Author Report Share Posted January 26, 2015 Thank you both, it was an awful time, and I am glad to be past it. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 26, 2015 Report Share Posted January 26, 2015 Hi potluck, just been reading through your post, I'm sorry u had such a bad run of depression, I too am glad you're not as bad as you were. Quote Link to comment Share on other sites More sharing options...
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