Over Stimulation

[Maxine]

I was just sitting here thinking about my body being so revved up, as I've been going through so much lately with my neck instability issues, and it's affecting my POTS the more I try to function physically, or if I get over stressed. Today my son came over to help snow blow our driveway---(it's a big driveway----wide near the garage), and he was bringing out two beautiful granddaughters with him for my husband and I to watch for a couple hours this evening. My son had to work, but came early to help out becuase my husband worked 12 hours in the snow delivering mail all day.

Anyway, he shows up---I open the back door, and there is little Mackenzie with Vomit all over her. The poor thing was all shaken, as this is probably her first time of this happening when she can realize what is going on-----she's 2 years old now, and really advanced. Right away my body goes into panic mode, thinking about a virus----if she has something I'll get it. I didn't mean to NOT think about her----I did that too. My son brought her into the house and put her into the tub. She seemed fine once we threw a few toys in there, and washed her up. My son did all the work, and I went around the house disinfecting everything. I told my son to throw her clothes and coat out. We had clothes, and he can wrap her in a blanket to go home. After she got out of the tub, she was doing fine---- even playing. She didn't have a fever, so who knows what it was. She came straight from day care.

Meanwhile, I'm trying to get things in order, and make some dinner. I feel terrible, as a little short trip to the store to pick up something for dinner wiped me out. I felt like collapsing at the check out. I had no business going, but my husband wasn't going to get off work until 8:00pm. 12 hour day! we had food, but nothing to put together for the girls and my husband. I can eat soup or whatever, but my husband needs a good meal. We have not been able to go to the store together for a long time-----we can't even get to costco to use our bonus check----whatever it is. We are so behind in stocking up. I was such a mess already, then my son comes in with the other mess. He decided to get her cleaned up and take her and Kaela home. He called work to let them know he was coming to work later. By then his wife will be off work.

When he left, I finished wiping down the bathroom, and making dinner. I couldn't eat the dinner with my husband. Finally I grabbed a few mashed potatos, and a tiny amount of peas---no meat. I picked at it, but finally finished it. MY belly was bloated way out----I looked 8 months pregnant. I took my blood pressure, and it was 118/85, and pulse was 90. This was pretty high for me, as I had taken my klonopin early because I knew my body was stressed. I was surprised my HR got up to 90. I took my bath, and noticed my head and neck are throbbing again. I took my BP and it was 157/101! My HR went down to 84. I'm think no way, so I took it again, and it went down to 135/89, HR of 77. Next it was 139/90, pulse 75. I thought maybe I'm so overstimulated, and it might be putting more pressure on my already miserable neck and cranial area. I thought I would try taking my BP laying down to see what happened. It went down to 111/81, pulse 72. I sat up and took it one more time, and it was 115/75---pulse 68. That WAS WEIRD! I have so much pressure between my ear and cranial area lately, and my POTs get worse when that does. I haven't been going out of the house much at all, and if I do my husband is with me. the weather is terrible around here, and way to draining for me.

It doesn't take much for me to be over stimulated, and today was very stressful---physically, and mentally. Yesterday was the 3 year anniversary of my mother's passing from cancer---(you all know they didn't find it until 48 hours before she died, and put her through horrific times from medical neglect). Ant it was the 1st anniversary of my brother Joe's death from Cancer on Feb 16th. Maybe it's all piling up on me. We also went to a wedding reception Sunday, and there was a Jeerry Springer moment with couple of the guests.

About a week or so ago I watched a move on HBO about Temple Grandin. It was very moving, and when she talked about people not uderstanding her, and how hard it is when she gets overstimulated, I cried---I coudln't control the tears. I know that feeling-----(I always refer to it as wanting to climb out of my own skin). If I didn't have this the rest would be easier to deal with.

http://en.wikipedia.org/wiki/Temple_Grandin

How many of you feel feeling overstimulated is one of the worst symptoms? It paralyzes me.....I'm good for nothing, and I get really mean when i'm like this. I don't want anyone to touch me, and a HUG feels like restraints.

I wonder if people with autism have some for of ANS dysfunction?

Seeing that moving made me think, and it also made me have a much better understanding of what people with autism go through.

Claire Danes does an excellant job playing Temple Grandin. http://www.hbo.com/movies?cmpid=s6#/movies/temple-grandin

http://www.imdb.com/title/tt1278469/

Well After little Mackenzie---aka Kenzie went home, she was fine and ate a peanut butter sandwich. She requested a fork to eat it with---lol. She's been using a spoon and fork for months.

I have to post a picture of those two.

Take Care,

Maxine :0)

[anna]

About a week or so ago I watched a move on HBO about Temple Grandin. It was very moving, and when she talked about people not uderstanding her, and how hard it is when she gets overstimulated, I cried---I coudln't control the tears. I know that feeling-----(I always refer to it as wanting to climb out of my own skin). If I didn't have this the rest would be easier to deal with.

It is so odd you say this because one of my boys has high functioning Autism, as well as the ANS stuff and EDS, these conditions always seem to have a knock on effect on one another. This is why trying to find meds to help has been a nightmare as one condition seems to effect the other so much. When he is stressing about something (ie Autism predominant, having to see new people and such like his ANS stuff flares up very bad making him very POTSie.

[summer]

Sorry to hear there are so many difficult things happening all at once. I can really relate to the over stimulation you are talking about. I also feel like over stimualtion is a big problem. I feel like if I can keep control of the things that are "coming at me" I feel a lot better, but life doesn't seem to be that way. I can even feel over stimulated just at the end of the day when all my kids and husband are home, and there is a lot of talking and people moving around me. All the lights being on in the evening can be over stimulating. If there are actually other stresses happening as well, it can really be too much.

Maxine and Anna, I also have a son with high functioning autism, and feel that I can now really understand his sensory intergration issues. I think experiencing this myself has better helped me to anticipate difficult situations for him and prepare him better for things that are coming up. As difficult as it is for me to deal with over stimulation, I realize that he has so many additional challenges that add to that - decreased social understanding, communication issues (even though he is totally verbal), etc.

I have read one of Temple Grandin's books and have seen her speak in person, but I have not seen the movie. I'll have to watch it.

Maxine, I hope you have a few quiet days to relax and spend some time remembering your Mom and your brother. This in itself is more than enough to deal with at one time. God bless and give you peace of mind and physical comfort in the days to come.

[firewatcher]

Overstimulation is still a huge problem for me. The Klonopin and Inderal help so much. Many nights I would lie awake all night long after watching a movie with my husband. Any sickness in my children, hard day or important project at work will send me into hyper-vigilance mode. I don't go to movies anymore or to the mall, too many lights, people, sounds and colors. I've read so many studies on migraines and brain dysfunction as well as creativity and brain dysfunction! I've always felt like creativity was almost a disorder. I know how you feel. One of the most fascinating connections that is being made is the predominance of visual artists with Parkinson's disease (something like 46% more likely in visual artists.) If you treat the disease, you eliminate their creativity. The brain is an amazing thing, whether it works or not.

[gertie]

I completely understand how you feel. Just taking care of a grandchild after school for a few hours is a stressor for me. If they're sick I know I will catch it & because I can't take med's that make me more stressed. I've been mostly home bound for years but if I feel well enough one day to go shopping the next day I'm exhausted. I feel over whelmed by what I think everyone else expects me to do. Hope you feel better soon.

[Maxine]

Thanks so much for your replies, support, and understanding.

Please forgive the spelling errors and typos on my first posting. I was way to tired to correct. I neck is so bad it's difficult to spend a long time on the computer-----even on my lap top.

We never did get out driveway done, and it's piled with about 4in. of snow. not a huge deal but my husband has to work another 10 hours today. The thought of him coming home to do that make me worry. We asked a guy around the block who has a plow to do out driveway, but he never showed up. there's an older kid a couple doors down, but his mother said he wasn't home, and would have him contact us. He hasn't showed up either.

I guess Mackenzie was OK last night. She may have eaten too much at once for lunch, and the snack put her over the edge. She's in the 97th percentile in weight for a 2 year old, and 87th percentile for height. Her doctor wasn't concerned about weight, as it was in the right weight for her height. He said she's just going to be tall. My son is about 6ft. 1in., but his wife is only 5ft. 2in. She has a huge appetite. They eat healthy things, and limit sugar.

Back to being overstimulated. I woke up this morning, and my BP was high just after sitting up. I only slept about 5 hours. It was 139/90, and pulse was 77. I'm on beta blockers (propranolol 20mg 3 times a day, and Klonopin .50 once daily). I usually only take half my dose of klonopin, and I stuck with that even though I felt bad. It wasn't an anxiety thing, I just couldn't get my body to calm. This is a milder spell then the ones I used to get before being diagnosed with POTS, and all my other junk. I also take 100mg. of wellbutrin in the morning. I wonder if I forgot it yesterday. I take to to help my BP from getting too low----even though it still does. That's why I was kind of surprised at the BP jump. Maybe the wellbutrin does something with my brain to prevent my body from becoming overstimulated.

I noticed my BP went down when I layed flat with head slightly elevated. It went down quite a lot. I'm wondering if the stress on my lower cranium due to the odontoid bone pressing on the brain stem from the instability could be messing with my BP also. I tried to go back to sleep this morning, but I couldn't sleep----my body still feels a little overstiumlated, but last BP was 105/70---pulse 66. I felt safe to take my synthroid, and just took my BP, and the BP is stable at 100/72, pulse 68. This is my usual when just sitting around taking it easy. As soon as I get up and move around this changes. Dr. Grubb said my ANS dysfunction is most likely related to the EDS and upper spine compression---(I also have congenital cervical spine stenosis).

I was just back in my e-mail deleting mail from a long time ago. I was reading some of the old responces to e-mails I sent to two EDS geneticists about how frustrated I am getting local docs to believe I have cervical/cranial instability.

One of them said, " I am sorry I don't have any creative ideas. The trouble is that there is no data on what works (including surgical approaches) for cci in the setting of joint laxity. All I can say is that try not to have your neck unsupported and if a position starts bothering you, change positions immediately. Don't let yourself sit or stand in one position too long. I am sorry I have no great solutions."

There's little understanding in the medical community on CCI related to EDS, and it's very difficult to see. Most of the time, nothing gets done until a lot of damage is already done. I also have the vertebral artery issue in the same area, and I was told by one of the EDs doc to be careful of BP spikes. That's another reason I get nervous when this happens.

I guess I need to be more careful not to overdo it, but my husband has worked so many hours, and it's difficult to make him come home and work more.

You all take care, and thanks again! I hope you all have less overstimulation in the future. Sad, that fun things are too much for us! I con't go to the movies anymore because it's like being in the middle of a tornado for me, and I can feel the vibrations of the loud speakers go right through me. I can't even stand to be near those cars with the loud speakers----thump, thump, thump!

HUG to you all!

Maxine :0)

I hate this snow---------------BUT I could be in Haiti with my whole family buried under my house. Could you imagine that with POTS? How horrible for those people. I hear people in NJ have snow that won't stop----it just keeps coming.

[janiedelite]

The overstimulation is so disabling for me as well. Talking is a big trigger, along with any type or stress or being up too long. My BP goes way up (not as much since I'm on carvedilol), chest hurts, skin hurts, can't be touched, migraine, light sensitivity, etc. I take 1/2 a vicodin for the chest pain and it helps settle me down quite a bit. On the more stressful days, I have to take a bit of ambien and it is the only med I've taken so far that completely relieves the hypersensitivity and allows me to sleep.

I asked my PCP once about taking a benzo but she was concerned about dependence (physical dependence). At first, I was in agreement with her because I knew that something like clonopin would probably be extremely effective in reducing my POTS symptoms and I was concerned I'd rely on it too much. Now, I think if I had something just for those really bad days, I'd be more functional during those times and I'd probably have to take less vicodin and ambien (I try to only take the ambien 2-3 times a week at most, and only 1/2 to 1 vicodin a day usually for my burning skin pain).

I'm sorry you had such a stressful day, Maxine! I understand how it feels when you want to help friends and family and get sicker as a result. But are you going to stop trying to be with them? Of course not! Thanks for the sweet photos.

[lieze]

I have difficulty with this too.

Pre POTS I abused my body. Ran on adrenaline all the time.

It seemed I was always hyper. Went without eating a lot.

I was up at 5 for work and could not eat that early so drank a large glass of chocolate milk then didn't get a lunch break til noon. I hated it believe me but it was my schedule and there wasn't much way around it. No wonder I got sick is what I think now.

I think my body finally rebelled and said enough of this!

Now though that hyper feeling has about quadrupled whereas before I would literally walk fast all over the building trying to run it off I guess. Now it is debilitating. Interesting huh?

So what I seem to be finding is if I can stay calm and pace myself I feel good.

If I let myself get carried away my heart starts flipping round I go into somewhat of an anxiety attack but honestly it seems situational as soon as I start calming down so do the symptoms.

So my goal is if I can stay calm then I won't send myself into the red zone if you want to call it that. My heart rate has came down a bunch in the last year. Maybe due to my ablation? When they did it the fellow told me when he was getting ready to discharge me said he would look for my heart rate to start coming down within a couple months. At that point I was laying in bed and resting pulse was 90. My heart rate seems to range now between 68-90? It was scary when it first started coming down after beating so fast it felt like it was totally stopping.

I do have my prn xanax I can take if I just can't get myself under control but I avoid taking it due to the addiction potential.

The fluorescent lights at work and at places like Walmart do bother me I get dizzy.

Feel like everything is spinning. And I just have to slow my pace or stop and wait sometimes before I take another step.

I don''t get near as much accomplished either and just have to accept this and try to work at things a little bit at a time so they don't become overwhelming when possible.

lieze

[firewatcher]

Thanks to recent scientific research, I have discovered that I have been "self-medicating" for years for over-stimulation and hyper-vigilance. I no longer watch exciting movies after dark, I keep the lights low after dark, I listen to calm, soothing music most of the time and even my career is therapy! (I'm an artist.)

Med Hypotheses. 2010 Mar;74(3):606-12. Epub 2009 Nov 6.

The creative brain--revisiting concepts.

Chakravarty A.

Department of Neurology, Vivekananda Institute of Medical Science, 1E 1202, Avishikta II, Calcutta 700 078, India. saschakra@yahoo.com

Creativity is a complex neuro-psycho-philosophical phenomenon which is difficult to define literally. Fundamentally it involves the ability to understand and express novel orderly relationships. The creative process involves four stages--preparation, incubation, illumination and verification. A high level of general intelligence, domain specific knowledge and special skills are necessary pre-requisites. It is possible that in addition, some creative people might have architectural alternations of specific portions of the posterior neocortex. Associated with such pre-requisites, the process of creative innovation (incubation and illumination stages) necessitates the need for an ability of divergent thinking, a novelty seeking behavior, some degree of suppression of latent inhibition and a subtle degree of frontal dysfunction. The author hypothesizes that these features are often inter-linked and subtle frontally disinhibited behavior is conducive towards creativity by allowing uninterrupted flow of creative thought possessing and opening up new avenues towards problem solving. Perhaps the most essential feature of the creative brain is its degree of connectivity--both inter-hemispheric and intra-hemispheric. Connectivity correlates or binds together functions of apparently structurally isolated domains on brain modules sub-serving different functions. It is felt that creative cognition is a self rewarding process where divergent thinking would promote connectivity through development of new synapses. In addition, the phenomenon of synaesthesia has often been observed in creative visual artists. Creative innovation often occurs during low arousal states and creative people often manifests features of affective disorders. This suggests a role of neurotransmitters in creative innovation. Dopaminergic pathways are involved in the novelty seeking attitude of creative people while norepinephrine levels are depressed during discovery of novel orderly relationships. The relationship between mood and catecholamines and that of creative cognition is often in an inverted U-shaped form. It is hypothesized that that subtle frontal dysfunction is a pre-requisite for creative cognition but here again the relationship is also in an inverted U-form. Copyright © 2009 Elsevier Ltd. All rights reserved.

PMID: 19896776

Apparently working decreased the postural norepinephrine overload. Maybe we should all take art therapy, or at least play tangram!