friday7

I did a quick search on Amazon for reclining wheelchair when I couldn't find a site that showed a chair in action. http://www.amazon.com/s/ref=nb_sb_ss_c_1_15?url=search-alias%3Dhpc&field-keywords=reclining+wheelchair&sprefix=reclining+wheel

What is interesting is that there are apparently replacable back rests for wheelchairs that allow you to recline - http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

I never knew that and have found that a problem with my wheelchair.

Here is a picture of a reclining electric wheelchair. http://wwingw.americanwheelchairs.com/specusedpermob.html

I am not recommending any brand here just trying to show options. If you do your research so know the brands and fit you need, keep an eye on Craigslist - you might get lucky.

If money is non-existent there is a site that matches donated items to those in need - http://www.lifenetswheelchairproject.org/pls/htmldb/f?p=224:1:1488785465166878::NO:::

Thanks so much!! I couldn't get the link http://wwingw.americanwheelchairs.com/specusedpermob.html It kept saying the domain was wrong?

But I did see the rest.. This is so great. If I could get one it might really help me be able to get out and volunteer.

The one at this page:

http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

says "Economically converts any wheelchair to a recliner." Is that saying you can attach it to a wheelchair that doesn't already have a reclining back? It really doesn't explain it further,so I don't know if I'm misunderstanding this.

I can't afford to get the chair myself, and I don't have very good insurance. I have Medicaid. But they were good at getting me the other wheelchair and that was probably more than five years back. So even though I still have that one they might be wiling to get me this since my needs have changed. Especially since the prices of the ones you showed me aren't too bad. If not I can try that site you sent.It'd make me feel much safer to be able to recline if I needed to..not having to wait for someone else to allow me to lie down.

You've given me renewed hope, that it can be possible for me to be out in the world again. Thanks so much for your help!

Friday7~

I know exactly what you mean, and I would love to volunteer, too. I know also that most places where I would volunteer (similar to a workplace) would need someone they could rely on to be there certain days or times during the week. Anymore, people really count on volunteers, and if we can't make it in, normally they would have to find someone else to replace us. That's why I left my job and why I don't consider myself up to volunteering yet.

And please, no offense, but you may want to change your verbiage from your "list of demands" to sounding a little more willing to work and compromise if possible. If these things are absolutes for you, then it may be hard until you're a little better to find a volunteer position. Perhaps something on the Internet?

Good luck,

Jana

Yeah that's it. It is hard finding the right volunteer job. There are a lot that they want you to go to training for a such.But I think if I look into the NJ volunteer site I might be able to find something, even if it's just doing some filing. I don't really want to be filing but I think if it were in a place that was active and had nice people around, it would be okay because I would like the social interaction. I would really love to find something artistic to volunteer at, but I haven't really seen anything around here that's artistic.

Oh and sorry about the misunderstanding but the part about the list of demands was intended to be a joke. I would only say that here. I would never say that to someone that I was applying for a volunteer job with. But when you write on the internet you can't use your tone of voice or facial expressions to convey that you are just playing around.

Thanks for the support.

susan-

I think you have explained yourself well in this post.

Keep a copy of it as it would make a great letter. If you write instead of phone you can control the amount of anxiety you are able to handle at any one time.

It seems to me that you would function better in the world if you had a reclining wheelchair. That would be a concrete request that the disabled group might be able to help with. With the other situations you could explain that you are trying to get a reclining wheelchair for your neurological condition causing unstable blood pressure (substitute endocrine or whatever for your particular situation) but that in the meantime you may have to lay down or recline periodically in order to stabilize your blood pressure and heart rate before your brain is deprived of oxygen and more symptoms occur. Bring a mat, get a cane or crutch to help you get up and down - that way all you are asking for is a bit of floor space in a pinch.

I know wheelchairs and canes seem like they are used for orthopedic issues but really you need to think of them as mobility aids = these articles can help you get out and move and interact with the public.

I hope something here helps.

Best of luck,

noreen

A never heard of a reclining wheelchair. I do have the type that the legs stay up. I dont' really use it much now. I got it when I first was diagnosed. Back then I needed to have my feet elevated just to go out, so I was able to get the kind of wheelchair that has legs that prop up. It does help a bit because if I were to sit at a desk or something it would at least keep my legs up and reduce symptoms.

But when you say reclining, do you mean that the back would recline as well? That would be great because then all I would need is enough room to put my chair back. I wouldn't have to worry if they had a place to lie down because I would have it with me.

The idea of bringing a mat is a good idea too. I don't even mind laying on the floor when I get the need, but I think that bothers people. They feel funny letting you lay on the floor or something. Or maybe it sounds like an odd request.I think if I had a mat it might make them see it as a medical need. Sounds weird but I think somehow if you have things like a cane or wheelchair I think people respect that you have an issue. So maybe even something as little as a note from a doctor and a mat might make them realize this is a condition that is real.

Thank you for your help.

You are a very strong person - having endured all that and you are still on the path of motivation and function....good for you! I suppose as far as developing a thicker skin - my guess is that it takes patience and practice. You have to choose to not let the comments or remarks and the outcomes dictate how you are going to feel and behave. Maybe you could practice the scenarios over in your mind ahead of time.... Like do a mental script where the person actually does shun you and give you grief - to which you visualize yourself continuing to be the strong gracious person you are - who has compassion for the one behaving miserably toward you. You understand it is her or his issue - that they are dealing with things in the way that is unique to them ... but you don't buy into their baggage, their rules and their ideas. You then visualize yourself remaining calm and focused and determined.... Set yourself some goals. Work bit by bit toward achieving smaller goals first and build on those successes. Remember the only time we fail is if we quit trying..... to reach our dreams and desires. Most often the only one stopping us from acquiring what we want out of life -- oddly is ourselves. We take our eyes off the prize and give into licking our wounds, blaming, becoming bitter, resentful or unforgiving. However all of this can change. We can choose to be kind to ourselves first and foremost by caring for our health. In all aspects - physical, mental, spiritual, emotional. We can practice confidence & self respect & love. When you work with others that aren't bending things to your way of seeing them - and they aren't doing things as you wish --- it's time to re-evaluate. Maybe another approach would work better, maybe there's a bigger picture, maybe your gifts and talents are best utilized elsewhere. We all have amazing gifts - and a drive to use them to help others deep within....uncovering what we can do -- with special needs - isn't an easy task ... but with perseverance you will find your nitch. You impact people all the day long in important ways that help them.....keep up the good work and stay strong as you are.

Thank you. You words help a lot.That part about staying strong and realizing that the person that I'm talking to has their own baggage is very helpful. And visualizing ahead of time seems like a good idea.I tend to take things personal because I'm am so over sensitive .

Thanks again. I am going to print this out so I can reread it when I want.

HI.I've been feeling for a while that I would like to get a volunteer job, but I am afraid because I have such unpredictable symptoms and people have a hard time understanding that.

I have never had a time where it was dangerous for my health to be working/volunteering.So it's not like should feel responsible for putting my health in jeopardy. But I do have limitations.

For instance.Well here's my list of demands.LOL

I need to be able to come and go.I can't have a day where it is absolutely necessary for me to be there. I have to be able to work for short periods of time and have breaks when I need them. I have to have a place to lie down if I need to.

This is the one that I worry about.But really it's not that much of an inconvenience.For instance once when I was in a partial hospital program, there were couches in one area, and in between groups I would recline for ten minutes.It got me through the day,and didn't hurt anyone else. After lunch I was able to lay down in an empty room, on the floor but I didn't mind..It also got me through the day.

The thing is. I had a couple of experiences with people not understanding this and making me feel like there is not place in the world for me unless I was completely well. It sounds like a distorted thought to me, but yet after the experiences I've had I kind of believe it.

One time I was attending that same partial hospital program just a a different year. I got sick, felt faint and wanted to lie on the couch. They refused and said it wasn't possible because there were people that were depressed and that they would then want to lie down on the couches if they saw me doing it. It didn't matter that I was sick, all that mattered were the rules. I understand the rules but if someone is sick you need to bend the rules. But no. So, I had to sit in a chair, and wait for my Mom to come pick me up. So while sat there in stead of lying I get worse and worse..By the time my Mom came she had to take me out in a wheelchair. I spends the next few days feeling horribly sick.

This could have all been avoided by letting me lay down on the couch. It made me feel horrible. Not physically but emotionally. Here was a place I was supposed to be getting cared for in and they were ignoring my needs.The only one that really helped me was another patient. She stayed with me and got me water. The staff just let me sit there.

It was a horrible experience, because it felt as if they were saying we don't care.

When I brought this up to my therapist there. She kept explaining why they did what they did and didn't take my said at all. I never felt safe there again.

I guess that experience has never left me.

But a few years later I was really depressed again. I needed help and tried to apply at the partial hospital again. Due to the fact that I couldn't even travel long enough to get to the one I went to before.I applied at the same hospital only a different branch, near me. The person on the phone was explaining how they couldn't accept me because I couldn't come all five days. I explained to her that I had attended before and that they let me come for three days. But then she told me they couldn't help me and I should go somewhere else. I explained that there was no where else for me to go. She kept telling me how it wouldn't work and was developing a tone. I told was trying to tell her how they allowed me to come to the other branch of the same hospital for five days and then cut it down to three after a week..but she didn't want to hear it, and was becoming even more abrupt. So I got upset at her..I didn't yell or call her names, I just kept asking her where I was supposed to go and trying to get her to understand that I needed help..and she hung up the phone!Now keep in mind this is a place that deals with people on the verge of suicide! I mean, could you imagine?! I couldn't believe it. So, I did something I would not normally do, I called her supervisor and told her what happened. She was very good. She apologized. And offered to let me come and basically did what the first girl should have done.

Only problem was after that, I again never really felt safe there.I mean that's all you really want when your out there.Just the knowledge that if you feel sick someone will be compassionate and understanding. Also because of my nervousness about not feeling cared for, I kept thinking 'what if I get sick, they wont' understand, They will throw me out', and stuff like that. Anyway, the anxiety produced more POTS symptoms of course and I wasn't able to attend. The thing is If I had felt welcomed right from the beginning this probably wouldn't have happened.

I still have these experiences in the back of my mind and I feel that no one wants me because I'm not normal. If I was normal I wouldn't have needed these people in the first place. I don't feel that anyone would understand. And all I'm asking for for really is understanding.I'm not asking for them to build a ramp for me or add parking spaces.Nothing major that comes out of there pockets. Just a place to recline if I feel the need to. I'm just so afraid to look for something because if someone says no, I feel that will add to the rejection from the world I already feel.

I know there are kind and understanding people out there, but I have trouble believing that. AND i'm afraid of running into careless lunatics like that last woman while I'm trying to find help.

I have thought about going to a Disabled person's program and asking for help. I have been to a support group run by them once, and they were very nice. I thought maybe they could represent me and explain to someone my conditions. I see they get people jobs that have certain conditions that the employer is willing to accommodate for, so I figure maybe they could do the same for me with a volunteer situation. But again I am afraid..I am afraid if they say no I will feel that rejection from the world. I know I have a disability but because I am not mentally impaired I fear that I will not be treated with the same rights. It's kind of like, because I look and seem normal I feel afraid that they wont' see me as disabled and feel that I should be able to do these things on my own. And I'm not doing so well on my own. It would really help to have someone behind me.Sort of an advocate.

I did call this place and leave a message, but they haven't called me back as of yet..And I guess I'm afraid if they do call..What do I say? How do I ask for help? How do I know what I'm untitled to as far as their help? And most important, how do I not get crushed if I wind up talking to someone that's not very helpful or concerned about me or worst, another idiot like the last time I tried to get help.

Well, I'd appreciate any advice.

If anyone has been in a similar situation..or has gotten help on the job. Or if anyone's ever felt shunned form the world of "the Normals", I"d appreciate your advice.

Susan

Thank you all for your replies.Mighty Mouse next time i see him i will give him the address of the website.Some doctors are just so obnoxious.Instead of giving me any kind of advice he started lecturing me about how patients overreact and try to play doctor.(!!!)Obviously he was clueless.

OMG that is the worst thing about some doctors. Their Egos. They think if a patient is telling them something that somehow that has something to do with them.

They can't think that sometimes we actually have valuable information to share..They can't think that we are intelligent people who have had an illness that there is not much help for so we are trying to help ourselves by educating ourselves.

The best experience I've had is where I found some info on the web and the doctor actually listened, discussed it with me and then we actually wound up treating me based on the information I brought to him..Wow..If only all doctors would be that willing to work with their patients. Unfortunately this doctor was a Gyno, so he coulnd't help me with other things.

I wish he was a GP.

I recently had an experience with a doctor like yours.Probably even worse..the Ego on this guy was unbelievable. He'd cut me off in mid sentence and tell me he didn't need that information. It actually to the point where I told him to let me finish my sentences. Then when he finally let me finish one , he told me "now that's the kind of thing I want to hear"...Duh..Then listen! LOL Obviously a control freak..So, I won't be seeing him again.

I wish I could buy some thick skin on the web somewhere.LOL I can't help being affected by doctors like this. Sometimes they make me so insecure I start doubt things that I know are right.

Thanks, TXPOTS, for your insight and support. Most useful is the advice to go slow slow slow ... unfortunately, that ship has sailed. I think my original post may not have been clear (no wonder since benzo heck makes brain fog even more foggy). I never messed with my nightime dose of C-pam, thank goodness. Otherwise, I probably would've gotten into seizure territory. My withdrawal is related to my daytime dosage, which had consistently (for a year) been 1mg D-pam 2x a day. But I started taking C-pam "as needed" then like an idiot decided I didn't want to take it during the day and cut back waaaay too fast and inconsistently - some days I take it, some days not, some days a little, some days a lot.

Now my problem is to get to a moderate daytime dosage without getting back to such a high and inconsistent dosage. I'd rather not take C-pam during the day. So I'm trying to get back to the 1mg D-pam 2x a day that worked well for me for so long. My body is both wanting more and not wanting any because it's so confused.

At this point, I think the best thing - and I believe this is in line with your basic insights - is to CONSISTENTLY take that goal daytime dosage of D-pam and just tough it out. I don't want to "taper up" to any more than that, then have to "taper down" - that seems stupid. I think I'm just going to have to be patient and realize that these withdrawal efx are going to last for a while, only gradually settle down.

Does that make sense? Any other ideas? For better or worse, the pharmaceuticals work better for me than herbals or supplements (long story). Everyone's body's different - some people love florinef, some people hate it. I know people who swear by Cymbalta and to me that's the nastiest med on the planet. Tomato, tomahto!

Anyway, thanks again for your help and support. Just knowing I'm NOT crazy to be feeling this way (though I was crazy to get into this mess in the first place - well, really just more ignorant than anything else) is a big help.

I used to take Xanax when I was younger and I decided I was going to stop..And you guessed it major withdrawal symptoms..thought I was going crazy.

Never stop taking meds cold turkey..Or even try messing around with your dose by yourself.I even had trouble one time because i split a pill in half..I didn't know it was time release..So, when I split it in half I actually increased it's dosage..Made me so sick...What a horrible night.

So I learned as you did the hard way. It's best to discuss what you want to do with the doc fist..You're body is screwed up right now so it might want a higher dose but that doesn't mean it's best.

You already went through the worst part. It Usually doesn't last too long. If you feel too sick though get to the doc. Or an ER if you feel that bad.

You said you want a moderate daytime dosage. So can you talk to your doc about that?

If I'm hearing right he/she had you on a higher dose and you thought that was too much?

Do you feel that he/she will not want you on a lower dose? Cause you really should be able to decided how much of this kind of med is right for you. It's not like thyroid meds or something,where you need a certain amount. So, you doctor should understand if you want to decrease the dose.

I hope you feel better.

I can't take any type of steroid. My body swells, especially my face and neck. My internist in the US said I looked like a person with Cushings. I had horrible stomach pains and it caused my liver enzymes to become high. If it hasn't helped with your ear problems I would definitely ask to be taken off. Maybe you can call an pester the GI's office and get in to see him sooner. I hope you start feeling better.

Yeah it hasn't helped with the ear problems..if anything it's worse cause now I've got this crushing headache. So there's no reason to continue.

The GI 's office already knows I want to get in right away..the best they can do is call me if someone cancels. I've been eating just soup the past few days which has helped a little..I don't know why but whenever I get GI symptoms it helps to eat soup.

Corticosteroids can irritate the stomach. I was told to always eat something with the pills.

Hope you are feeling better soon.

Thanks..Well my stomach is sensitive to begin with, and I don't really know if I ate something when I took the pills. I still couldn't get in touch with the doc that prescribed them.Well I'll make sure to take them with food until I get a hold of this guy and tell him I want to go off. thanks.

Everything sort of depends on why you were prescribed the methylpred. Which doctor rx'd it, at what dose, and for what reason?

There are many diseases for which it is prescribed which can also give you many of the symptoms bothering you. I was on corticosteroids for 6 years at doses ranging from 40 mg to 2 mg.

Corticosteroids are really not to be messed with without medical supervision. E.g. you can't suddenly stop a high dose after being on it for a period of time without dangerous results such as stopping your heart.

You have to check back with the MD who gave them to you.

Sorry forgot to mention the reason I was taking them in the first place was due to inner ear problems. I"ve been having trouble with my ringing in the ear, feeling of fullness in the ear, some hearing loss, the usual symptoms I get when i get an ear infection or fluid in my ear. The ENT didn't think I had an infection but said to try to methlypred for two weeks and see if it helped. I'm on 4mg for ten days.

So, I think it's a pretty low dose, but I would definitely not stop any drug suddenly..I did that once when I was a teen and experienced terrible withdrawal symptoms.

I just wonder if it can have anything to do with what I've been feeling lately cause it started around the same time I started the meds..could be a coincidence..I'm just looking for a reason for this sudden onset of GI symptoms after having such a long break from them..I was doing fine for a few years with only minor symptoms..And then all of a sudden about two weeks ago, I start getting really bad GI symptoms.. So far the only thing that's different is the pills..Well I'm calling the doc and telling him I want to stop the Mehtylpred just in case it could have something to do with it.

After a sinus infection would not resolve with antibiotics alone I was put on methylprednesone. Besides the fluid retention problems and swelling of my entire body, I also was unable to move muscles as well. I felt rubbery. I recall being overwhelmingly tired too. Very foggy brained. I don't recall the GI issues at that time because we were focused on resolving the sinus infection. I hope you figure out the GI issues...

If nausea is partly a problem, you can ask about trying charcoal to settle the nausea.

Interesting. I'm not seeing any swelling, but I feel really bloated. I have used charcoal in the past for GI symptoms. I was thinking about that also..I hate that I can't see the GI doc for two weeks.

I've been trying to reach the doc that prescribed the methylprednesone but so far no luck.

Hi Lieze

My Ablation was about 2 ? years ago now, and I would say within days after I was still feeling the same. I do get the butterfly feeling you talking about at times but its more when I get the extra beats. When im getting the high heart rates it just fills really fast some times it can beat really hard and I have trouble breathing. I have also noticed that at times and I don?t know if this has anything to do with it or if it?s a coincidence but I couth after also but not every time. In fact last night I woke up 3 times coughing really hard and was not able to get my breath at all?very scary..

I was reading this page today http://en.wikipedia.org/wiki/Dysautonomia

and this line struck me and I thought of you. " In some cases, a procedure called "cardiac ablation" can be performed to stop the heart symptoms completely. It is not recommended in POTS patients, and can in fact worsen tachycardia."

Is this what happened to you? Do you feel it is worsened after the operation?

I would ask for the actual test for the ttt. I know I have read on this forum that someone had one done and the dr told them they were negative for POTs, when in fact they did have POTs, the dr just didn't know what he was doing. I would also see if the dr will put you on a holter monitor to find out what was going on. Actually I would just find another dr altogether and get a 2nd opinion.

This is really the problem. I have gone to docs that had never heard of POTS. Then I'd explain it to them and they'd think it was just that I had trouble fainting if i got up to fast. I think a lot of doctors really don't really know a lot about POTS unfortunately. They call it rare..I dont' think it's that rare either. If doctors never heard of POTs or know little about it, how are they going to diagnose it?

I'd definitely try that list of doctors someone posted here..Unfortunately I'm not in your state but there might be someone on that list you can see in your area.

I"ve been feeling sick for a few weeks..well extra sick;) and I've been going through my head trying to figure out if anything has changed lately to cause this and the only thing I can think of is I've been taking Methylpred for a few weeks. I'm not sure if this problems started before or after taking the drug..But anyway, I've been having GI symptoms. I feel really bloated and have lots of pressure in my arms and legs and chest. It sometimes gets worse after I eat.

I"ve had GI problems in the past. I even had an ulcer and have been on Prilosec for a few years. But I was almost to the point where I felt like that was in the past.

And now it' s back and it feels like all of a sudden. A few weeks ago I was okay and now I can't get to sleep because it' s so bad. I"m hoping it's not another ulcer..But at the same time I wonder whether the Methylpred could aggravate an existing ulcer? Nothing else has changed..I'm taking the same meds, eating the same things, taking my fiber pills etc. The only thing different is the Methylpred.

I've also been feeling lots of pressure in my head. And some loss of balance/dizziness. Again I've had this problem in the past but not like this and again this came on rather suddenly and more severe than I've ever had it. It's feels as if someone is squeezing my head.

Also I am hypothyroid. I read that for some reason you should talk to your doctor about talking Methylpred with Thyroid problems but it doesn't say why. In another site it said something about not absorbing the meds correctly..So I don't know if it's just that the thryoid meds won't be absorbed correctly or if it can cause side effects..It doesn' t really go into detail.

I have an appointment to see the GI doctor but not for two weeks. And I'm not sure if i should stop the Methylpred, cause i'm not sure if it could be causing any of this..I'm afraid if it is causing it I could be in a lot worse shape in two weeks.

I was just wondering if anyone else has been on the Med and what experiences you've had.

I know a lot of us have chronic sinus troubles, does anyone have any effective remedies or treatments for sinus infections? I just took an antibiotic last month for one and this morning woke up with that same sinus pain. I don't really want to take another antibiotic so soon, any suggestions?

AS everyone else said. The neti pot..I use a squirt bottle version which basically does the same thing. My doc also told me to put a few drops of oregano oil in with the salt solution. It's supposed to have antibacterial and anti-fungal properties. But you have to take it slow with the dose because it is strong! First I put one drop than when I got used to it I put two.

I have also have frequent ear infections and therefore am looking for alternatives to antibiotics. Last time had a cold I took one clove of fresh garlic, chopped up with a glass of tomato juice each day. Usually it takes months of getting better and worse before I finally feel well. Probably due to it getting into my ears and causing an infection. But this time I didn't get an ear infection. And I felt better within two weeks. So I'm really hoping that the garlic was the reason.

Also cutting out dairy has helped me.

I haven't been in the sun, but if I go outside and come back inside it triggers it. :\

Also, my house doesn't have ventilation much so it can get extremely cold/hot/damp inside depending on weather.

The doctors won't treat me or even have a look. I went to the ER trembling from head to toe with excruciating headache. They wouldn't even check my head, just gave me pain meds (which didn't work) and pretty much said I was crazy. Healthcare is awful here if you don't have insurance. My mom went for a small headache and they took her right in and ran all sorts of tests.....because she has insurance. I go in feeling like I am dying and fainting all over the place, and they just send me home sicker than when I left without a care. Sometimes they just ask if I been taking drugs. I never touched a drug in my life.

I do usually get these at night when laying down. But lately they've been happening in daytime also. Like, right now, its hard to feel my head because so much pressure. And my muscles spasm in all directions on me. I'm trying to just ignore it but sometimes it gets painful. So I just sit and stare blankly trying to fight it off. i wish to God the doctors here understood and cared. Just having a tiny bit of relief would be so wonderful.

oh wow , well that makes things even harder. Even if you got up the dough to see a doctor , they'd probably want to do some tests and that would run into big money. I don't know much about getting care without insurance but maybe this might help:

http://findahealthcenter.hrsa.gov/

You might be able to get someplace to work with you..For instance I've saw this CFS specialist and they didn't take Medicaid. I had to pay up out of pocket, but they were very good about understanding me not having the money. If I went in for a visit they would take two checks totaling the whole fee. Then they would cash one , the month of my appointment, and then they would cash the second check the next month. The also gave me a reduced fee.

The weather can really makes things worse though. I get sick from the heat and I've been hoping for rain to cool things off. Then the rain came and I got bad sinus headaches that made me sick. I wish there was some special insulation you could put in your home to keep the weather from affecting you.

I would recommend writing things down daily. For instance you said if you go outside and come back inside it triggers it.

Stuff like that. Like what the weather is like, how you feel. How you feel after doing an activity, or eating different foods..Maybe then when you can get to a doctor you can have some info that might help them figure out what's wrong. Or you might just start to understand it yourself.

Thanks guys for the posts.

I hope its nothing like amnesia or anything or that sort

I don't really have trouble with remembering my past or even what I ate yesterday,

Its like id do something the be completely unaware that I did it very soon after.

I'm probably going to the doctor soon I'm just scared it might be something bad or incurable

Hopefully it works out.

Garrett

Well everyone does experience these problems as you can see. Make an appointment with the doc to talk about it , and then try your best not to think about it until then .I know easier said then done. But every time you find yourself worrying about it remind yourself it is not going to help you in any way to get anxious, It just always makes things worse. Try not to go to the bad or incurable place. It doesn' t have to be bad or incurable. As you can see lots of people with POTS have memory problems. Some have it worse then others.

Sometimes my problems scare me and I'll think i"m getting worse and worry about it, but then I stop thinking about it and it it'll go back to normal. So, I try not to go to a dark place about it cause that makes it worse.

There are exercises people do to help memory. Here's a site I found that has mental exercises http://www.lumosity.com/

I usually play video games on Shockwave. It keeps my mind working. They always say the best way to keep your mind healthy is to use it. So, I play strategy games and puzzle games. Things that give my mind a workout but aren't too stressful. plus they're fun . I feel it helps me keep my mind active.

I feel like I am being electrocuted every day now. My brain feels hot then the electricity zaps to my muscles and they jump uncontrollably. With it comes a rush of "energy", yet I feel numb and week, but like my body wants to rush off. It isn't anxiety. It seems more to trigger when I go from sitting/standing to laying down. Laying down makes it worse,e specially when I am tired and want to sleep. My muscles physically jump. Family members touched them and said it feels like my body is trying to jump out of my skin. My head feels like someone is sitting on it when this happens. It usually happens out of the blue and tends to get worse if there is lightening/thunder/rain/damp weather OR excessive heat that day. And the weather has been horrible for the past two weeks here.

What is this?

Oh, and it also can feel like sometimes my skin is on fire from within. This actually leaves my skin dry and cracked and blistered! Something crazy is going on with me physically and I can't stand it. It makes me want to go jump a cliff sometimes! :\

I'm not sure exactly what is going on , but I know the burning feeling from within.. My dad had Neuropathy with his diabetes. And I've had it in small doses..Since POTS has neurological symptoms it makes sense. Everything you've described does sound neurological. I'm not doctor though.

But also I know the heat has been affecting me terribly this year. Have you been out in the sun a lot? I also felt that burning thing in my face after spending the day or rather night in the heat watching an outdoor play. I was so sick and my face burnt as if it were sunburned..but it wasn't. It was also really dry. So I figured I was probably a little dehydrated.

I've felt little zips and zaps at different times , especially when my POTS was real bad and mostly while standing for too long in one place. But not as extreme as you are talking about, and not usually while laying. How are your electrolyte levels? Have you been to the doc?

I?m not sure if im in the right place , im at a loss and just need some help and hope you can relate. I started having heart problems now about 7 years ago when I notice my heart racing. Long story short after wearing the 72 hr heart monitor the DR found out my heart rate went up to almost 300 bpm.

I went to one Heart Dr who told me it was a problem with a value and gave my blood thinners, it never fixed it. It just got worse. Skip some months back to the Family Dr as im feeling bad again and she wants to send me to another Heart specialist who wants to do a Heart ablation and tells me it will fix everything as this is common in a lady my age ( young 30?s). I was told that right after surgery I will be 100% . I went in for the ablation and not even 72 hr later my heart is still racing and im feeling extra beats and fluttering, which I was also feeling before ( sorry forgot the add that).

I left it a couple months thinking that maybe my body just needs to adjust. Well I started to notice that im tired all the time now and if I climb stairs or do light activity as simple as vacuum im puffed out and my heart is going like a ran a 10k run. I went back to the heart Dr who did my ablation and he didn?t really seem to care and said that I should try to relax!.

Well tings went really bad from there, I started getting really dizzy and passing out. My husband has come home and found me passed out or has found me on my knees as im bout to pass out. Sometimes I know right before and other times I had no idea. But I would know right before my heart would race and also beat hard. . I have had EKG?s done that show irregular heart beats and a high heart rate . If I walk a fast pace on a tread mill within say 30 sec?s my heart will be over 180 and im only 35. My husband just got a stationary bike and I was trying to use it the other night very slow and within 1 min?s my heart was at 198 so I did stop straights away and I was very dizzy..

My current heart Dr says he thinks I have Potts, I have a internal heart monitor implanted at the moment . I get very bad chest pains, that do go down my left arm. I get pain in my jaw also at times, at times I lay in bed and cant sleep as its so bad and I wonder if im going to wake up. I?m very worried about this. My DR seems very good but on the other hard , I worry am I putting to much trust in him??

I just got a Polar watch so that I can monitor my heart more, in hopes to keep the passing out limited. I just fill so helpless as im so tired all the times some days are worse than others and I cant do the most simple thins it seems. I used to love going out and shopping these days just a simple store trip makes me sooo tired. On my last visit the DR said my monitor picked up that while sleeping my heart went up to 198 bpm

I called me DR 2 weeks ago to tell him I cant handle the pain anymore and that im getting dizzy and out off breath really bad. He tells me.. Do you think it might be stomach acid or arthritis ? Uhhh that got me so mad when he has seen how high my heart gets.

Does anyone have any advice for me, I done know any one who has this?

Wow sounds like you've gone through a lot , especially for someone so young. First off I'd see another doctor. If it were me I would want some other opinions as he doesn't seem to be helping you , or hearing you.

Is your current doc the one that did the Heart ablation? They don't seem to be sure if it's a heart problem or not..Cause POTS isn't really a heart condition, but these guys are doing surgery on your heart! He told you he think you have POTS..but What does he intend to do about that?

Do you have any blood pressure issues? Or low salt levels? Exactly what tests have they done?

What state are you in? maybe someone here has a doctor they trust that you can see. I am in NJ and could point you to the doctor who diagnosed me if you're here. He's a CFS specialist but he also knows a lot about POTS.

Susan

Well, thanks for the thread as it may explain my problems also. I was in a wheelchair and unable to drive myself around for most of May and June. I only got in an a/ced car with my ride to doctors and infusion clinic and was let off at the doors. Then, once I could walk again, I just drove myself around doing errands and getting my physical therapy twice a week for my foot (severe inflammation caused a tendon to burst in two) and getting an IV each week.

By the weekend, my BP was up 90 points with minor heart rate increases. I even went and got an extra IV on Monday, but I'm just no better at all and unable to get my bp down.

I live in Hotlanta - no exaggeration - and the "feel like" temp with our huge humidity was between 105 and 120 today, with a high of 98 degrees. This has been going on here since May. We are talking temps over 95 degrees for 19 days in a row, for instance.

Y'all think this could cause bp over 200/110?

Thanks - more thoughts, please.

Elegiamore

Well, I've never had this particular issue ..maybe someone else here has. But I know that heat does exacerbate POTS symptoms so I guess it's quite possible. How about where you're getting the IV's what do they think?

I was diagnosed with POTS ten months ago...it came out of nowhere. I was totally healthy before that. But I work full time at a greenhouse. It has definately made life interesting. The heat is just wiping me out. No one understands why I cant get my hours in and why I look okay but say I dont feel good.

I walk around with an ice pack but at some point that just doesnt work! I have heat intolerance issues so I always feel like I am having hot flashes already! I am not sure how much longer I am going to be able to keep working there. I am too hot and once I get home I am way too tired to do anything else. I am looking forward to some cooler weather!!!

Wow that's a really difficult issue. It must be hard not having anyone around that understands too. Have you told anyone you work with your have POTS and that the heat makes it worse? is there anyplace there that you can work that might makes things easier..say if you work in the greenhouse with the plants, could you maybe work at a register or some other place in the building? just throwing ideas out here.

I was just looking into getting help from a place nearby me that helps people with a disabilities. It surprised me what they could do to help. You might want to look into one of these kinds of programs to help you keep your job. I'm not sure what's out there in your area. You'd have to look that up. But here's a site that is kind of what i'm talking about:

http://www.direct.gov.uk/en/DisabledPeople...mmes/DG_4000347

I figure before you go and quit your job there might be some organizations that can help to make things easier for you one the job.

I've noticed this too and the pressure does build up and shoots up to the head and gives you an over all woozy feeling. Who knows maybe the gas pressure even triggers the vagus nerve.

In the beginning my gas pressure was higher, a lot of heart burn, belching like a sailor. Now I'm getting more abdominal pain and I think I"m getting trapped gas in places like my side where maybe there is that turn in the colon. Maybe things get slowed down there.

When it was higher I used simethicone tablets and that often helped.

You can also try drinking something like creme soda that usually brings it right up for me.

I was having headaches and stomach aches for 3 days and a friend I have said she gets the same when she gets sluggish. She uses a colon cleanse and she says it takes the headaches right away.

I am a bit leary to put anything in my system so I might look for a more natural route like maybe an apple or something that will help add some fiber or even a stool softener could keep things moving along more smoothly.

Good luck I know it can make things a bit miserable.

I find it helpful to know that you and your friend experience headaches because of this. I keep thinking they are separate issues because that's what a doctor told me once. MY intuition tells me this is not true. Well I should say my body tells me. Cause every time I have this feeling it is also accompanied my lightheadedness and headaches or pressure in my head.

I really haven't had this problem for a long time. I used to have it all of the time. I went to doctors for help. I even had trouble breathing. They would say it's anxiety. I"d say I wasn't anxious until I felt I couldn't breathe right. But so I noticed more and more that whenever I felt this way as soon as I would get rid of the gas I'd feel better, and breathe fine.

Anyway, I think I have let things go in the past year. Once I get rid of a symptoms I tend to get lazy about keeping up what helps keep it away. It's like I feel I'm normal and forget I have to do the things I need to, to keep it that way.

I was taking bran every morning, and four fiber pills . And also the Prilosec. After I got regular I was feeling pretty good for the past year. But lately since I was feeling good, and I'd skip taking a pill here and there. or I'd forgot to take them for a day or two. And I've stopped taking the bran. It didn't really effect me , and then I stopped the Prilosec. I ran out and hadn't had them for a week. Now I'm feeling all gassed up again.

It kind of figures. But , first I got all panicky,wondering why I was feeling this way, until I sat and really thought about it. I realize it makes sense that I'd feel this way since I wasn't taking care of myself.

So I keep telling myself that I've got to get back on my routine and get regular and that should help . In the meantime It's just good to know I'm not alone.

thanks;)

Susan

I know that POTS can cause GI symptoms but I 'm curious to what kinds of symptoms people have.

I often have a squeezing sensation in my arms and legs. A pressure. But when I look up these symptoms it always mentions pressure in the chest not arms of legs.

ALso when these symptoms are bad, it seems that walking actually makes it worse. It's like it makes the gas build up more. This does'nt make sense to me because I've always heard that movement or walking will help break up the gas.

But I've had this happen to me so often now. I'll be feeling lightheaded and all while walking and then I'll start to feel pressure in my limbs and also chest. If i keep walking it continues to build up and then I feel like I'm going to pass out.

The symptoms sound like POTS symptoms, but, this is different thanwhat I normally experience when I get POTS symptoms from waking.

Usually when I get POTS symptoms, faintness, etc. while walking I'll sit down and rest. Then i 'll continue on. And since I started taking salt tablets and got my pressure up, I usually don't feel faint from walking as long as I sit enough in between.. I found that if I walk then sit then walk then sit , and I don't overdo it. I'm usually fine.

But this is different. I'll be walking and I'll start to feel weak and my legs will start to feel pressure in them. If keep walking it just builds and builds. and then goes into my arms.

I then find myself spending the whole night up in bed throwing up water and trying to burp . Then if I can go to the bathroom I feel some relief..Also I'll feel relief if I burp enough.

I find that this happens more if I don't keep regular. Which I haven't been lately..And I was off off my Prilosec for two weeks so I'm back to being gassy again. (I started taking them again, but only for two days now)

It happened today a little. I have had gas the past week, and today I was just sitting at my computer for a while I got up to go into the other room and as soon as i started moving I felt like i was going to pass out. I quickly laid on the bed, and then I felt the pressure in my arms. I took some seltzer , and started burping, then went to the bathroom and within a little while I felt better. I was able to walk around. It was definitely the gas that bothered me..It just doesn' t make sense . I can't find anything about gas making you feel faint or lightheaded.

I don't know I guess i'm just wondering g if anyone else has anything similar. I told my doctor and he was like 'walking doesn't build up gas'. But I swear in this case it does. I wonder if having POTS makes my problem different than the normal person with gas.

I didn't want to spend the $180($160+shipping) for the Cool Sport phase change vest right away, so I first just bought their neckerchief thing for about $32($20+shipping) and it wasn't as cool as I thought it'd be. I guess it's better than nothing, just to have a little spot of cool on you, but it warms up quickly, and since it's not ice, doesnt get that cold. I dont know, maybe I'd need to wrap another round my waist or something to notice more of a difference.....

Really? I got them for about ten bucks+ shipping on Amazon..Dont' remember the brand name though. I think it' s 'evercoo'l?

I found the best way to work with them is to have several and cool them in a bowl of water with ice for about a half an hour-or more if you can spare it. Then I put one on and when I feel it's losing it's cool;) I trade it for a fresh one and put the warmer one back in the cold water. It's not as good as a cooling vest i'm sure, but at least it helps.

I didn't take them with me last time I went to watch a play in the park and I got sick. So I got this flexible plastic cooler, you know like you keep lunch in and I'm going to keep a couple of them in there with ice packs around them when I go out from now on. It's good that it's a small lunch pack kind of thing cause that way I can just bring it in the stores with me so the ice packs won't melt . I could shove my wallet in my pocket., and It'll just look like a weird purse.LOL ..I think it's a good plan..I'll see how it works.

Has anyone ever tried Provigil for fatigue/tiredness? My doctor prescribed Ritalin and Vyvanse in the past and I find these can be helpful, but increase my fatigue when they wear off. Experiences/opinions appreciated!

I tried Provigil a few years back. I didn't' notice any difference on it..But then I don't have the best of luck with meds.

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on.

During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out.

I've been sleeping a lot this week and need every minute.

OH you poor thing! How horrible! Glad you got it back.