Star382000 Posted October 30, 2004 Report Share Posted October 30, 2004 Hello to all who read this. I just registered here although my dad found the site some months or so ago. I'm trying to look around and get a hang of everything and helping but there's just so much it's overwhelming me. I have a feeling the fact that I not only have POTS (hence why I am here) but also ADHD is at least partial reason for my being totally upset over something that's nothing..I love to help and want to in any way I can, along the way hoping to find help for myself too..I can't remember my point and origional question and reason for this post. I'm so confused and I'm sorry Just any help with all this overwhelming options and links would be really wonderful..thank you bunches Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 30, 2004 Report Share Posted October 30, 2004 Welcome KateI'm glad that you decided to join us. You will find many nice people here and they usually have a lot of support and solutions to offer.How long have you had POTS and how are you doing with your symptoms? I understand the cognitive difficulties as I suffer from them a lot. I either sound like a drunk half the time or someone that hasn't learned to speak yet. When I'm really tired, I try to avoid speaking all together. I can't remember a thought from one second to the next sometimes, so don't worry about it. You'll remember your question in your own time.steph Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 30, 2004 Author Report Share Posted October 30, 2004 The symptoms started to really develope and kick in this past May-June. I remember the last month of school I missed about 15 days because I was home, mostly sleeping totally oblivious to the world. After being to like 6 different doctors and specialists in other areas I was diagnosed with POTS so it was relatively not very long ago. The sleeping 20+ hours on end has greatly lessened but my body still needs lots of sleep and when I am awake I feel like I could fall asleep right there, no matter where I am. Standing up isn't anywhere near as bad as it was, so long as I take my meds. But now that I'm on more meds (diagnosed with ADHD when I was in elementary school and depression a couple years ago so I have meds for those) I get really bad chest pain in addition to awful headaches. The headaches for the most part aren't as bad as they were, but they can still get to be pretty bad. So far they've done 6? nerve blocks, first two in back then last time I was at the pain center they did 4, 2 in the back of my head and 2 in front. But they're not helping we've been told that they may take time to work, but it doesn't seem to me like they are working, and they hurt so much. I'm all for them so long as they help, but it's so frustrating and angry etc. when I get to feeling that they don't and that they wont because they hurt so much I go back next week and hopefully will have better news or something. I was looking at other posts and read a post of leah1321's in which she saidI find that my short term memory and my speech are affected by neurontin plus I get 'narcoleptic' type episodes from it.and that's something the anasthesiologist at the pain center pointed out when we first met them. He said that at times I am very articulate and know what I am saying and can go on and on and on and he noticed himself without us even talking about it that at times I greatly stutter and can't find words and such. but that was before they even put me on the neurontin I think. I can't remember It's all just so frustrating, especially with how it's affecting every aspect of my life and school..so frustrating Thank you so much, I cant express how much it means to have hepl, and at least people trying to help, truly thank you Quote Link to comment Share on other sites More sharing options...
blackwolf Posted October 30, 2004 Report Share Posted October 30, 2004 Dear Kate,Welcome to the site!ADHD, depression, sleeping to much or not enough and confusion are all part of this wonder world of POTS. The fact that you have more than one dx (diagnonsis) is common. I have POTS, CFS/Fibromyalgia and depression. Just think, there are all sorts of lovely troubles out there for us. Chronic pain is one of my biggest problems also. I prefer Tramadol and asprin (tylenol, ibuprofin and most pain killers are out). Headaches and migrains are also regularly seen trouble, some can be from your meds (like florinef). what do you take, if you don't mind sharing? My confusion ranges from no real trouble to making typing and reading here impossible. By the way, I failed the ADHD test on WebMD, I'm not to worried though as I still get by.Take your time in absorbing all this info. It can be very overwhelming. I like to print articles, etc. out for easy referance. I also find myself reading and rereading what has been said in topics just to keep straight what I want to say and how to say it. I also proof read my typing about 3 times before I post, I try not to look to out of it, though I often fail. I hope you continue to see improvement and get the help you need here and with the doc's (they can be "difficult" at times).Blackwolf Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 Hmm, I was recently put on Florinef. At present I am on200 mg Zoloft80 mg Strattera300 mg Neurontin (3x a day)5 mg Florinef10 mg PropranololThose last two dosages might be off a little, I'm typing off the top of my head *warm fuzzy that I can remember all that* And along with what you said, over-the-counter-meds don't help at all I tend to second-guess myself after acting, it'll be after I post this that I'll read over it a thousand times and keep wanting to change things I used to be a perfectionist, heck I have friends who called me Perfectionist but now, I'm able to appreciate the small things so much more.ADHD and depression run in my family, especially my immediate family. My mom has loads of health obstacles for herself but thankfully because of those she has connections and my doctors are wonderful, trust them with my life and have no doubts about that I've been told I am really smart and wise and all that and that when I say things online (I totally prefer to type than talk using my voice..it's so much easier..) that I sound so much older than I am and that I don't seem like I have trouble with words, but that's what I have the most trouble with Thank you so much for your help, it really, really means a lot to me Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 *bubble* is being totally waay oversensitive and touchy and all that also a part? I mean I was like in tears when I read that the bracelets are metal because I cant wear metal, but went upstairs to my mom (my dad and brother totally zone everything out) and she said we can put felt or something on it so can get them once available, I love the idea! But yeah, being totally moody and so overly sensitive and it's really getting hard and unbearable because I try to not lash out at my friends and such (have already lost one of my best friends..) so I tend to lash out at myself and that's just a nasty circle..but yeah, would that be a part? Quote Link to comment Share on other sites More sharing options...
blackwolf Posted October 31, 2004 Report Share Posted October 31, 2004 Dear Kate,Florinef could be a cause for the headaches, mabey not. That is a common side effect. It was one reasone I quit, it also made me feel "full" and I wouldn't eat or drink.Yes, sometimes I feel "overwhelmed" and moody. I find that sometimes I cry about the dumbest things (like tv shows) and feel really silly for doing it. I have learned that there isn't much to do for it and have accepted it as is. I was on Paxil once and that controled it, but I had to stop because of elevated liver enzymes. I'm trying to get on something else but unlike you, I have "difficult" docs.As to the bracelets, there is a coating that you can either have put on by a jeweler, or if you can find it, put it on yourself. I just can't remember the name, if I do I'll let you know.Blackwolf Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 The headaches were one of the first signs that got really bad 9 months or so ago but I will have to keep that in mind. Origionally I had been on Adderall for my ADHD but one of the reasons I switched those meds was because it'd been known to cause headaches. The docs at the pain center in the city said that the stuttering and headaches could be partially caused by the amount of zoloft I'm on but someone would have to be ill-informed or really not-smart to lower that.. The smallest things upset me and I get all uptight and cry about. I was near crying earlier because of the thing with the bracelets, I got so excited about them. And thank you I can't wait to have one and those cards too and wear it at school, I know for one it will definatly make me feel better and not like Im just some lazy person doing horribly in school and that Im not trying..Thank you all so much, you're helping a whole lot, I'm like near crying again..but kinda good tears..kinda not because of other things going on right now..but yeah thank you all so so much Quote Link to comment Share on other sites More sharing options...
Gena Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Kate,I'm glad you found this discussion board. It's sooo helpful. I get bad headaches too. I mean incredibly bad, like my head might explode because there's so mucn pressure. The last month though they seem to have subsided (knock on wood). Lying down, an ice pack on my neck and being very still seems to help mine.As far as your meds go, I realize people find medication beneficial but when someone is on so many it takes a toll on the liver and the whole body. Science doesn't yet know all of the interactions and possible side effects when putting multiple drugs in the system. So I guess it makes it hard to determine if your symptoms are from POTS, ADHD or the combinations of drugs.I noticed you were on Zoloft. Have you ever considered trying natural remedies to replace this? Sam-E has been proven to work great for depression and ADHD without all of the yucky side effects of a prescription drug. It's been used widely in Europe for years. Also their are other things such as GABA, Omega-3 fatty acids, and calming herbal combinations you can buy at a health food store, as well as identifying possible food triggers, etc.Anyway, when I was first dx'd I was a mess, a real basket case, and very emotional and sensitive too. My emotions have leveled out, although I still get some nocturnal panic attacks every now and again. I just want to say that we're all here for you. This is a safe place to come when life gets overwhelming! Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 I've been brought up in a family not against medical aid when it is there. I will list down what you said and ask my mom if we can search on them some more and see about getting some aside from meds and time, and some of my mom's vicadine (sp?) on one occasion, the only thing we've tried is Healing Touch but it didn't help so much, I think that was because I didn't go in thinking it would.. I've been really sensitive for a long time but especially these past months, and I dont know whether thats because just lots has been happening or not..like right now I'm near crying and asking some of my friends (gotta love instant messengers in the middle of the night) if I'm obsessing about something and just.. So often I feel *is reminded of a poem* that I'm just taking things waay out of proportion and behaving like I shouldnt, thanks to my brother in part..when you grow up with things constantly being told to you, whether you want to or not, you start to believe them as true.. I will look into those herbal meds and such, thank you a lot! Quote Link to comment Share on other sites More sharing options...
corina Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Kate.just wanted to welcome you. Because of brain fog and tiredness I don't have any advises to help you (at leasst not today ). Just wanted to tell you that the overwhelming is something we all have now and than (I think) because of everything what happens to us. Wish you all the best,Corina Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 31, 2004 Report Share Posted October 31, 2004 Hey KateI was going to ask you about the Zoloft too. I'm not sure what everyone else is taking here but 200 mg sounds like a lot. I take 12.5 mg a day but I'm very sensitive to medications.I'm more emotional too. I rarely watch t.v. but was watching that show (can't remember the name) where they go in and redo a person house. They usually choose a very needy family that has fallen upon hard times. Anyway I cried over this silly show. Well it was about this family who had basically moved and given up their life so that they could live in Calif near a children's hospital because their daughter had to have a heart transplant after she was born, so maybe not so silly any mom will tell you My point is, yeah we all go through our emotional times. So just know that your not alone. Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 One of the doctors said it was a really big dosage but he didn't know all the internal etc. reasons for my being on it and all. And it doesn't help completely, but it helps lots I hardly watch tv anymore as well. But mostly it's thing like right in front of me that will set me off crying or something that someone says or something that I'm working on but won't work or I get stuck on a small detail or something with my homework. Have you found anything that helps you when really emotional times?And once again I have to say, thank you all so so so much, here I am near crying again it just means a whole lot to me, you're all really wonderful people, thank you Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted October 31, 2004 Report Share Posted October 31, 2004 {{{{{{Kate}}}}}-You remind me of myself when I was your age. Reading your posts brought me to tears. I can totally relate. The good news for you is that you've been dx with POTS and hopefully you can get the correct combo of meds for you!!! Your Zoloft dosage is definately too high!! I would talk to your dr and cut back right away. I am a psych and in younger kids it can cause the symptoms you are describing. My daughter was put on it too and she was a disaster!! It can cause you to become VERY emotional! Please call your dr and get it lowered!Also, it takes time to find the right meds and the right combos. The difficult thing for you will also be that you're growing and your hormones are changing. Go to your dr regularly. If you feel that your symptoms are getting worse, make an appt. They just need to adjust your meds. The good news!! You sound like you've got a GREAT head on your shoulders!! You will Get through this!! You can educate your friends so they can understand. Your "true" friends will always stand by you. Hang on to them!! You are a strong person!! Hang in There!! Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 Thank you so much! I can't explain what you're saying that means to me..I'm nearing tears yet again I've been on the zoloft since before being diagnosed with POTS and my being waay too sensitive seems to be compartively more recent. I'm even more emotional when I miss taking it in the morning I see the same psychiatrist my mom does as well as an amazing LCPC who wholheartedly agreed that lowering the Zoloft wouldn't be good for my mental health. Would you know of another med that could help at such levels but not cause said side effects? And as for the hormones, mine are definatly there but thankfully the big change and them really kicking in are past and they seem at least kinda stable (for lack of better terminology )And thank you! *uber warm fuzzies* I have most amazing and wonderful friends who I wouldn't be here now had it not been for them. I've shown some of them this site and they keep saying how wonderful it is that I've found it and how nice everyone is. They've said it's helping them to learn about what I'm going through too, and one of my closest friends said she'd join but she'd feel out of place since she doesn't have any form of dysautonomia I love my friends Thank you so much, words don't exist to show my thanks, thank you thank you thank you!!! :D Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 Oh and I have an apt. at the pain center on Tuesday but I don't know if then I'll be seeing my specialist too or not. I see my LCPC (she's really wonderful, a reverend too) weekly and the psychiatrist every 3? weeks. I think I see her sometime within the next week or two as well so many doctors, I don't know how my mom keeps track of all of mine on top of all of hers! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted October 31, 2004 Report Share Posted October 31, 2004 Dear Kate,Personally, I think that Zoloft is to high. I was on Paxil and it worked really good for me, Wellbutrin is another option that seems to be popular as it has very few side effects, I know it is very common for CFS/fibro cases too. I know that some here are on Xanax for anxiety as well. TV is something I don't go without, I might not really "watch" it so much as I need that back ground noise to cover up the ringing in my ears, it is really bad lately. I have to admitt that I am a CSI junkie, all three shows.Blackwolf Quote Link to comment Share on other sites More sharing options...
Star382000 Posted October 31, 2004 Author Report Share Posted October 31, 2004 My mom is, or at least has been, on Paxil before and my dad and brother are on Welbutrin and I know that's something that the doctors have brought up before, that name as a possibility. Thank you so much!I haven't watched losts of CSI, but some of my good friends from school LOVE it Quote Link to comment Share on other sites More sharing options...
opus88 Posted November 1, 2004 Report Share Posted November 1, 2004 I became ADD because of my illness. I can go for days or weeks when I just know my IQ has dropped at least 30 points! And this topic is the first time I've seen mention of people who are usually articulate having trouble with stuttering and an inability to think of words. That is driving me CRAZY! I thought I was alone on that one so I'm very glad it was mentioned.On another item mentioned here: I am very disgusted with the medical world and know without any doubt that I am doing as well as I am because I have stayed away from their tunnel vision and their "throw a drug at it" mentality. I encourage you to take a good look at the number & dosages of medications you are taking and consider how they are likely causing you more harm than good (in many ways). Knowledge is power, and no doctor will ever care as much about you than you do.(And yes, we always watch CSI & CSI Miami!) Quote Link to comment Share on other sites More sharing options...
Star382000 Posted November 1, 2004 Author Report Share Posted November 1, 2004 Oh yes, my ability to talk and put together words from what I know in my head..just so hard now!Usually I have been very happy with the medical world from my perspective. My mom is on a lot for a lot valid reasons and when she doesn't like something or someone she changes quick as can.I am just being overwhelmed by so much positive and wonderful helpful information, there is so much I want to make note of! *is at pain center again tomorrow*(what CSI I've seen is great, but I just LOVE Law & Order) Quote Link to comment Share on other sites More sharing options...
Roxanne Posted November 2, 2004 Report Share Posted November 2, 2004 HI EVERYONE! I DON'T POST TO OFTEN, BUT I DO READ EVERYONE ELSE'S ALMOST DAILY. ALL OF YOU ARE SO WONDERFUL IT HELPS TO READ YOUR POST. I WAS ON ZOLOFT FOR AWHILE AND WAS HAVING ALOT OF PROBLEMS BUT DO TO OUR WONDERFUL MEMORY LOSS I REALLY COULD NOT TELL YOU NOW WHAT THEY WERE. I NOW TAKE CELEXA INSTEAD AND HAVE BEEN ON THAT ALONG TIME NOW AND THAT SEEMS TO BE JUST FINE. WHEN I SAW HOW HIGH OF A DOSE YOU TAKE I COULD NOT BELEIVE IT I THINK I WAS ON 50. I ALSO READ ABOUT THE BRACELETS I CANT WAIT! WELL GETTING TIRED SO NIGHT ALL. Quote Link to comment Share on other sites More sharing options...
Star382000 Posted November 2, 2004 Author Report Share Posted November 2, 2004 My mom (who has many health concerns of her own) is on more zoloft than I as well as on more meds (which I am now begging to question if they are all helping or just adding to her concerns?) which is probably why we haven't questioned the dosage before, this is definatly somethign that I am beginning to be concerned about and am trying to take care of with making notes on, as am I trying with many of the other very helpful things posted here, just wish my computer wasn't so evil and freezing up on me Thank you all so much for everything! Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted November 2, 2004 Report Share Posted November 2, 2004 Welcome Kate, I just turned on my computer after few days and saw your posts. It does sound like you are on a lot of medication. I think I have chemical hypersensitivity so I try to get by on the least amount of medication possible. I did find the Neurontin extremely helpful initially for all the headaches and muscle aches and pains. I used to take 400mg four times a day. Zoloft made my blood pressure fluctuate even more than it would have otherwise. A very small dose of Xanax was the only medication that worked to help with the tachycardia. Beta blockers were the worst for me. Getting extra rest throughout the day and at night has helped as much with my mental fogginess than anything. Exercises to strengthen my leg muscles, extra fluids ( I drink Propel all the time because it has less sugar than Gatorade and I am carbohydrate sensitive), and pacing myself throughout the day has helped alot too. Nothing seems to relieve all my symptoms which is frustrating. Don't stop any of your medications without talking to your doctor--many need to be tapered so you don't have a worse problem. I am still very emotionally sensitive too but I have seen some improvement in that area as well over time. You seem to be so mature. I know I wasn't at your age. Hope you continue to improve over time. Martha Quote Link to comment Share on other sites More sharing options...
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