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hoping for some answers - Breeze - 05-24-2013
hi everyone, i joined hoping to get some answers but i dont even know if i am on the right site for the right thing. to be honest i dont have a clue what could be wrong with me if anything is wrong even but i have to try, i cant keep on like this. i might find that SPD isn't my problem and have to move on to some other forum though. i might find that i dont even have a problem, at least not any disorder but i cant seem to find any other explanation.
i have symptoms of SPD, well some of them, a lot of them sometimes, and sometimes only a few of them, yeah very inconsistent. there are certain things i dealt with as a kid that i dont anymore, and symptoms that just recently appeared that i dont think i ever had, or that i ever had to this degree.
i dont think i could go through all the symptoms i think are related right now, so i will just introduce myself. anyways i like to go by nicknames online i never go by my real name so just call me Breeze or CJ if you want. i was diagnosed with ADD when i was 7 or 8 and i have always struggled with a lot of things but despite the diagnosis my symptoms are never consistent, im not sure if its just ADD, or if its SPD, or maybe both. i was put on concerta for a while but was taken off of it, i dont know if it was working or not i never really knew what it was for, that was never explained much. i recently found SPD from a google search and did a check list i got a score of 300 and something, not sure if thats high or low the site didn't give the details just the checklist. so i guess i may post my symptoms later in a different forum, which forum should i post them in?
anyways i look forward to meeting you all and i hope i can get some light shed on this once i post about my symptoms if thats ok.
RE: hoping for some answers - Breeze - 05-25-2013
no one wants to say hi? im sorry if the post is too long maybe i should shorten it?
RE: hoping for some answers - Rinne - 05-25-2013
Welcome, Breeze. It sometimes does take a couple of days for people to reply on the forum - it's a relatively small number of active users.
Best suggestion: find an occupational therapist in your area who deals with SPD and get evaluated. I think for a lot of us, sometimes things don't consistently cause issues - sometimes it depends on the surrounding stress in your life.
RE: hoping for some answers - Breeze - 05-26-2013
(05-25-2013, 11:44 PM)Rinne Wrote: Welcome, Breeze. It sometimes does take a couple of days for people to reply on the forum - it's a relatively small number of active users.
Best suggestion: find an occupational therapist in your area who deals with SPD and get evaluated. I think for a lot of us, sometimes things don't consistently cause issues - sometimes it depends on the surrounding stress in your life.
thanks, i do plan to find an occupational therapist as soon as i can, right now i cant afford it though and dont have a job but when i do i will. until then its just good to know that there are others who understand. yeah it seems like a lot of the more obvious symptoms only started happening after i graduated and certain events made things more stressful. i know only an OT can give a definitive diagnosis but until then i would like opinions from people who either experience SPD or knows a lot about it so i may post my symptoms in a different forum.
RE: hoping for some answers - Dani - 05-26-2013
Hey Breeze!
Welcome to the site.
So, wondering if it's ADD, SPD, or both? Well, according to the preliminary numbers speculated by the SPD Foundation, about 50% of all people that have ADD/ADHD also have SPD and could benefit greatly through OT and the sensory integrative therapy approach.
Since you refrained from mentioning it in your first post, though, what symptoms are you curious about? What experiences have led you to believe there's more going on besides just ADD?
Furthermore, I hope you enjoy your time here. It's a slow-moving site at the moment, but I really hope to get it much larger as time goes on. I've just been very busy trying to get my life together on my end before I jump in pretty heavily on promoting the place. I really like its potential but realize it's going to require a hands-on approach to really grow.
I hope you stick around, but most importantly, I hope you figure out what's going on and get the support you really need, wherever it's coming from. Thanks for posting.
RE: hoping for some answers - Rinne - 05-26-2013
For me as well, Breeze, it seems like things got worse once I left school and started in uni/real world. My OT agreed that that is often the case - in school you are more 'sheltered', the real world forces you to deal with things and there will be a lot more stress that brings the symptoms out more. As a kid, there probably wouldn't have been enough about me that would have been 'noticeable' for me to be diagnosed. As an adult, definitely noticeable (although it's taken me until 30 to find out). As Dan said, talk about the things that you're curious about, here!
RE: hoping for some answers - LAC1961 - 05-27-2013
Hi Breeze. You mention you enjoy researching, which is something I also love to do. I've recently gotten into learning about Primitive Reflexes and how they cause developmental delays and sensory issues. If you're interested in finding out more, check this out:
http://www.movetolearn.com.au/ten-gems-brain.html
RE: hoping for some answers - Breeze - 05-31-2013
hi thanks for the welcome Dan and Lac1961 , sorry it too so long to reply. i did mention some of my symptoms but deleted them cause i was afraid it was too much to post at once. but i think i will post some of my symptoms here now.
i would like to ask. what is sensory integrative therapy? i know i can just google it but i will ask here as well. is it something only an OT can do or are there methods for helping SPD that i can do on my own?
anyways i hope you guys wont mind me posting a lot of my symptoms here right? I'll start with the most prevalent. some of them are mild or are just little quirks i have or had, others actually bother me or get in the way of normal functioning. also i am a little confused if i am over or under sensitive, maybe i dont have SPD because it seems i am both at the same time it doesn't make much sense but i have to find out for sure or at least get opinions here.
I'll start with some things from when i was little and go from there, really I'll just add them as i think of them. when i was little and still had my hair washed in the sink, i HATED it so much, i actually cried and no my mom never hurt me i just didn't like the way it felt, the shampoo was so slimy, the water didn't bother me i have always loved water, its just the shampoo and conditioner and anything else. i also disliked having my hair combed a lot more than i think most kids would have at that age. both of these diminished after a while though and now i actually like the feel of shampoo or i dont mind it...go figure.
i had a thing for chewing on the insides of my cheeks a LOT, i think to the point where there might still be lines in my mouth where i chewed, i dont chew on my cheeks anymore though. also i am a picker, like I'll pick the skin at the sides of my fingers until they hurt then i stop. right now i cant seem to stop (very unhealthy but extremely hard to stop) chewing my lip and it looks weird but i do it without even thinking, or i notice it but still cant help it unless i really concentrate on not chewing my lip. its like a compulsion, an itch you cant ignore.
i often walked on the tips of my toes, just when normally walking around. i dont know why i did this and still sometimes do though not as much anymore, also i did and still do walk barefoot as much as i can i always liked feeling the ground beneath my feet.
some ways i think i am sensory seeking is that i love the feel of water, i could spend a whole day in the pool if allowed and i love swings and swivel chairs, and really anything like that that moves. recently i have found that keeping a spray water bottle beside my bed and spraying my face and arms actually help to calm me if i am stressed or wake myself up if i am tired, or i just use it cause i like the way it feels. also i love it when its windy out, i mean REALLY windy. most people probably would think im crazy cause i like to go outside on realy windy nights cause i love the way the wind feels and sounds when its a bit stormy, and if its drizzling thats even better. of course i know better than to be outside if there's lightning thats dangerous. so now you know why my name here is Breeze, i am extremely picky about screen names so using just Breeze should tell you just how much i love the wind. this is probably just preference but i haven't found anyone who is like this yet.
i didn't think i actually fidgeted a lot cause i never really payed any attention to whether i did or not, but i have been reminding myself to catch myself when i do and i notice i do it a lot. if i am not actually engaged in some activity which i need my hands for i will almost always find something to fiddle with, a string, a piece of paper, really anything. i do it mainly if i am thinking or daydreaming but i also do it at other times as well. also i tap my foot a lot when sitting still, never really thought about it but i guess its worth mentioning, i try not to do that too much out in public though, people will think im strange.
i am always told i talk either too loud or too soft. i have good hearing as far as i know but when i get excited i talk VERY loud, i dont really notice it though until someone calls me down on it. on the other hand if i am nervous or feel intimidated i will almost always mumble, maybe thats normal i dont know, but the one that really concerns me is my talking too loud. i only know this may be a symptom cause it was listed on the check list, its something that has always been a problem.
also last i am going to mention some things that may or may not have anything to do with either SPD or ADD but i feel is worth mentioning, i want to know if else experiences these symptoms here and if they are related to SPD or not.
first there are three strange things i have had all my life, tinitus (ringing in ears) in both ears, its loud enough to definitely hear it but i have had it all my life so it doesn't really bother me unless there's total silence. the other is visual snow, a sort of fuzzy static in my vision, also i see these little white specks if i look at a really bright surface like snow or the sky. i dont know what this is or if it even is related to SPD but it might be. and then the other thing is very mild but still noticeable synesthesia. i basically can hear movement even when its silent, for instance if i mute the tv and keep watching with every movement i can hear a little "whooshing" sound, not literally hear it but its like my mind associates movement with this sound for some reason, it doesn't bother me i didnt even notice it until i found out about synesthesia, i knew it was there but i thought it was normal and its very subtle so kinda hard to notice. it neither bothers me or helps me its just there.
there are other symptoms but this post is getting way too long now. i think as i discuss things in the forums I'll eventually get around to telling about all the different experiences, but I'll do that as i go, not all at once here. what do you guys think? is it SPD? something else? are these things normal?
by the way the checklist i mentioned which i scored around 300 and something was this one here, im sure a lot of you have already seen it but if not you can check it out if you like:
http://spdsupport.org/resources/symptoms.shtml
i was just wondering, it would be an extremely long post (much longer than this one even) but could i make a thread perhaps in another forum and post my results? i would basically copy and paste all of the ones that apply to me so that people here can see a more fully list and. i would only post the ones that i would give a 5 or 4 but not the others.
RE: hoping for some answers - Dani - 05-31-2013
Hi again Breeze. I have no problem with you making large posts, but I agree that, since this post was so long, it might have been on the "too long/didn't read" side of the fence for some people. I always try to respond to those too, but I often feel bad if I don't have the time to respond to everything a person has said.
(05-31-2013, 12:26 AM)Breeze Wrote: i would like to ask. what is sensory integrative therapy? i know i can just google it but i will ask here as well. is it something only an OT can do or are there methods for helping SPD that i can do on my own?Sensory Integrative Therapy is generally provided by an OT, yes, but it is the overall concept that some people have sensory integration (processing) issues that interfere with their daily lives, and that by addressing those issues, one can anticipate widespread improvement in their ability to function. As far as how it looks, well that depends upon the person and the therapist. I good therapist will allow you to lead the way in therapy and do things only when you are ready to do them. They will know how to detect subtle signs in your body language that indicate how you are doing with a specific treatment method.
The methods tend to involve things that are aimed to help the body appropriately process input in the everyday environment. There are also protocols that can help the nervous system regulate, like the Wilbarger Brushing Protocol, therapeutic listening, and the interactive metronome. It really depends upon the therapist's qualifications, experience, and evaluation of what you could probably use.
Right now, before you are even seeing an OT, you can start up a sensory diet. It's a fairly simple concept, really: identify possible things in your environment that cause you sensory overload, remove those items or replace them as best you can, identify possible things that might help you feel calmer or more energized/focused, and work those into your daily life on a regular basis. If you want more in terms of ideas, just ask.
Quote:symptomsOk, I just decided to do things this way rather than a ton of quoting:
As for the shampoo and tiptoe walking, I would say that both of those sound like they could easily be related to tactile defensiveness. I am curious, how are you when it comes to light touch, as in very gently touching or being touched on the skin? If it drives you crazy or at least causes anything besides a soothing feeling, then it's a good sign that you are living with that part of the spectrum. I have a ton of issues in that area, myself.
When it comes to speaking too loudly, chewing on your cheek and stuff, and fidgeting a lot in general, those all sound like possible sensory seeking behaviors to me. I would say those could very well be related to SPD, indeed. There are of course other explanations for some things, but if doing those things comes natural and helps you focus, then I would say that is definitely an SPD sensory seek.
You mention loving water and wind, and that tends to be a common theme for a lot of people: either they hate it, love it, have a situation like mine, where it's kind of both awesome and rough. I pretty much always have a fan on me because I need to feel air moving or else I'll feel overloaded easily. At the same time, though, it does generate some light touch sensations, which can be annoying. I also love water, but only if it's the right temperature. If it's too cold, then going in is horrible.
Oh, and it is also very common for the body to signal sensory overload by making your ears get hot and red and start burning or become painful. I find applying ice or water can make me feel a lot better when I'm really tense or overwhelmed. So, that very well could be SPD-related as well.
Also, speaking too loud or too soft and going back and forth between them indicates general auditory processing issues to me. It could be that you have a combination of both sensory seeking/under-responsiveness and over-responsiveness. It could also be the case that you have problems discriminating between volume levels and how they sound/feel when you are using them. I have a lot of problems with that one, too.
Quote:first there are three strange things i have had all my life, tinitus (ringing in ears) in both ears, its loud enough to definitely hear it but i have had it all my life so it doesn't really bother me unless there's total silence. the other is visual snow, a sort of fuzzy static in my vision, also i see these little white specks if i look at a really bright surface like snow or the sky. i dont know what this is or if it even is related to SPD but it might be. and then the other thing is very mild but still noticeable synesthesia. i basically can hear movement even when its silent, for instance if i mute the tv and keep watching with every movement i can hear a little "whooshing" sound, not literally hear it but its like my mind associates movement with this sound for some reason, it doesn't bother me i didnt even notice it until i found out about synesthesia, i knew it was there but i thought it was normal and its very subtle so kinda hard to notice. it neither bothers me or helps me its just there.Now, with tinitus, I know it has been brought up many times by people, the ringing in your ears. You see, when a person has SPD, I see it as a sign that the person's nervous system is under-developed to begin with, which means they will likely have an increased likelihood of having other neurological issues. Tinitus can be SPD-related, since even mundane noises can be perceived as harmful.
Seeing specks? That could be a lot of things. Of course, if the nervous system has a hard time processing very bright visual sensations, then it makes sense it would have abnormal reactions like seeing specks, and possibly even getting major headaches, when it is being called upon to try to process the stuff. I don't know if I'd consider it a different vision problem, like degenerative issue or anything, since I believe that would generally lead to seeing stuff like that all the time. If it's a problem for you though, I might recommend getting it checked to make sure it isn't something else first.
Synesthesia is something that comes up fairly often on here. Again, I believe this harkens back to the 'dysfunctional/under-developed nervous system' and how having wires crossed or malfunctioning in your brain could lead to processing issues and/or synesthesia. I wouldn't necessarily call it a part of SPD, but it is interesting and I do believe people with one have a higher likelihood of having the other than people in the general population would.
Quote:what do you guys think? is it SPD? something else? are these things normal?Answers: many things, yes, possibly, and not exactly.
I believe it's quite possible and fairly likely that you do have SPD. Not just a simple case of it, either. I am seeing symptoms from several areas of the SPD spectrum, so you could have a case that is at least on the moderate end of things. There are other things some of this could be, but the symptoms you list are fairly convincing to me, at least. Because you seem to be 'all over the map' on the sensory stuff, I find it unlikely that you have about a dozen different mild disorders and instead have a wide spectrum of similarly related sensory issues, a.k.a. SPD.
I would also say that, while some sensory tolerance differences and sensory preferences are very normal, the inability to function with or without certain forms of input are indicators to me that something is going on that could easily be interfering with your daily life. I think you probably have SPD and could benefit from an evaluation/treatment.
Quote:i was just wondering, it would be an extremely long post (much longer than this one even) but could i make a thread perhaps in another forum and post my results? i would basically copy and paste all of the ones that apply to me so that people here can see a more fully list and. i would only post the ones that i would give a 5 or 4 but not the others.Go right ahead! That would be great.
In fact, I think we used to have one of those a while back. Feel free to create a new one, though, as I imagine the other one is pretty old, hehehe. I hope this helps.
RE: hoping for some answers - Rinne - 06-02-2013
I have tinnitus, too, and it's one that I'd have never guessed could be tied up with all of this.