fainting and possible wheelchair

Hi All,

I know that most of you know about the fainting problems I have been dealing with over the past two years. I have good days and bad days. the past two days have been really bad- the worst that my parents have seen. (I have been this bad- I was just around my roommate more}. Anyway, we are still searching for answers and help. I am applying for a service dog, but that will take a while. I am also applying for disability- denied last year, appeal will be sometime in the fall.

Anyway, safety is becoming a larger issue for me as I faint all the time and in strange places. My parents and I have thought about a wheelchair before, but it has never been this bad. As much as I hate to admit it, using one on bad days might be a good idea. Safety wise, it would not be a problem in our house. I am at the point where I think I may have to accept using a wheelchair- on bad days and when I am in danger of fainting in strange places. I already use one in most grocery stores (actually, the stores here have asked me nicely if I would mind using the cart-due to the constant fainting. }

Everyone here has been extremely supportive throughout this whole convoluted journey and it is a hard thing to accept. I am only 29. I think it might be a good idea, but I would really like your objective opinions as well. I don't know what I would have done without this page.

Anyadvice is welcome.

Pain free days,
sailingm

Aww sweetie what a question to ask at your age... I am so sorry.
But yes, one that has to be asked. Well let's face it- if you are asking it, then you probably are needing it.
If complete strangers are approaching you and suggest you use something to support yourself to prevent falling down - then yeah, I guess, it come to the point where you definitely need a wheelchair.

It doesn't mean you will be in the wheelchair forever, mind you.

There is still ongoing investigation why are you fainting, isn't it. I sincerely hope the reason of your fainting spells will be discovered someday, and sooner than later.
But for the time being, it's better if you will prevent any serious injury from falling down. So yes, it's yes from me.

Hugs, sweetie. I'm sure it's not easy having to deal with stuff like that at your age. more hugs.

Risa

Ugh, I am sorry for the decision you have to make. But I think it is probably a good idea. It has to be better than fainting and hitting you head. And do you also faint while sitting, or is only while standing up? Maybe you'll faint less in the chair.

I wouldn't look at it as a terrible thing you have to do, but possibly a way to let you have more freedom than you have been able to have lately. I agree with Risa too. Don't look at it as a permanent fixture, just a safety measure that you use while you put all of the pieces of the puzzle together. Plus, handicap parking rocks

Good luck.

there is nothing wrong with using a chair. i have one that i bought from a medical supply store that we use if i have long distances to travel inside the mega-hospitals or expecting a syncopatic episode from tests or procedures.

good luck!

I'm sorry you are having to entertain the thought of the wheelchair SM.....but don't worry about it...do what keeps you safe. Know that we are always on your side.

Supporting You.

Sailing Muffin:
For awhile now, I have wondered if you might be safer in a wheelchair, but feared offending you by bringing up the subject. I repeat, as a temporary safety measure, just until you can get your fainting under control.

If you need one, then you need one; whether or not it embaresses you.

There are many different styles of wheelchair made these days; not at all like the clunky one (which we still have) that my grandparents took with them to the Seattle Worlds Fair in the 1960s. They took turns pushing each other around the fair in it.

Sailing, is it your POTS that is doing this to you? I'm grateful that my POTS doesn't reach the levels yours does, so I guess this is one thing I can remind myself to thank God for. But I do truly feel bad that you are having to go through this. As much as using a wheelchair carries a stigma, it may just be the best thing for you at this time of your life. Especially if you approach it as a temporary thing and don't let yourself sink into thinking that it will last forever, it could be beneficial. Just be careful to keep yourself from becoming morbid. That has been my response any time I have had to take an extra step to care for my migraines. I feel like it means I'm always going to be worse, and I can't do anything to get better.

But now I'm starting to learn to channel my emotions into focusing on the good rather than the bad and try to think of the migraines as a long-term, but temporary treatment needed to get the big picture sorted out. If you think of the wheelchair in such terms, it will probably help your spirits a lot more than if you think of yourself as having "given in" to having to use a more dramatic treatment.

Here's lots of hugs to you!!!!

Hi All,

Thanks so much for your support and advice. I really do not know what I would do without y'all.

I really appreciate the support and the persp[ective. You are right, there is nothing wrong with a wheelchair, and on bad days, it would be safer. I am going to call my doctor tomorrow and see if he will write a prescription for one. I do not think it will be a problem. It would also mean that I could do somethings on bad days and not have to worry as much. It is a hard thing to face- to know that you are, for some unknown reason, randomly losing consiousness and all you can do is treat the symptoms and deal with it. Still, you are right, it is not a permanent thing. I hope it never will be.

Yes, it is the POTS/ Neurocardiogenic syncope that has brought me to this descision. I do faint sitting down as well as standing, so we will get one with a chest strap- so I won't fall over in it. At dinner with my parents, I now make sure that a chair is pulled out next to me so i can fall into it. Also at restaurants, I try to sit in a booth, if possible because the fainting is less visible.

Anyway, thanks for your support and help.

Pain free days,
sailingm

Now don't forget - every thing has a positive
- you'll now be eligible for disabled parking!
- you can park in the isle at picture theatres and not be blocked by the tall person in front
- men are suckers for helpless woman (perceived) so you might be on to a good thing.

I think it's a good idea. There is no point in damaging your body further in a fall and complicating your health even more.
You have enough to worry about now trying to find answers without trying to find them with concussion.

Take care, answers will come.

Hi All,

I spoke to my internist yeaterday and he has written a prescription for a wheelchair.

I also spoke with Dr. Grubb's office in Toledo. He is supposed to be treating me for this, but it is nearly impossible to get a hold of him and many of my calls haven't been returned. His nurse finally called yesterday and said I needed to come in for an appointment. (If we were not in a different state, one that is far from ohio, it would not be a problem. She said I needed to be re-evaluated. I asked what tests they would do, and what it would entail. Finally, I got her to talk to both me and my parents. The only medication suggested was epogen, which my drs here would end up being responsible for. She also said that I haven't been seen in a year- I reminded her that I was seen in January, when the loop recorder was implanted. The recorder hads shown only normal sinus rythem, with occasional sinus tachycardia. I asked if it could be anything else, she asked if I had seen a neurologist. I said "yes, with three clean normal EEGs and one 24 hour videotaped EEG." The bottom line is- can he help or not. If it is not cardiac, what do I need to do. I left a message about an appointment. However, my parents and I are still mulling this over. I know he is top in the field, but if he is not avaliable to help, then I need a new dr in charge of this. What do you think?

There is a new doctor at the university medical center, about an hour and half north of us, who has helped some people with fainting. So I will probably see her. At the very least, it would be another opinion and she might be able to help with the disability stuff.

Sorry this turned into a vent, I am just frustrated by the fact that I keep fainting, not much helps, and the drs are not helpoing much. I also feel like I am the one running all this, with no clear diagnosis, no clear idea of where to proceed. My internist and neuro are doing the best they can to help me- both have gone above and beyond the call to help me, but they do not know much about this disease. So I am stuck dealing with symptoms and treating them as they come, rather than treating the disease. I am really frustrated by the whole thing.

Also, thanks for the positive points about the wheelchair- better parking spaces, it might help me get a service dog faster, and I would be able to get some good seats. I just hate that I have to do this.

Thanks again.

Pain free days,
sailingm

I'm sorry things are so HARD for you, Sailing Muffin.

What I think...Dr. G is dealing with his own health problems and his wife's very serious cancer. He has these obvious distractions right now. I read about others who are being treated by him and all the delays...

My friend loves their POTS doctor in Oregon (the one that I told you about). Another internet friend is with super POTS doctor in Texas. Marc thinks highly of his Johns Hopkins' doc. So those are three to think about.

Going to a doc closer to you might be helpful. You never know until you try.

But in my book, going to a doc that comes highly recommended by someone who is currently dealing with POTS (and someone who is currently very happy with their POTS doc) would be a good thing.

Mayo Clinic and such can refer you to other docs, but personal stories (like on Caringbridge Sites) can be vastly helpful in finding the good ones.

Cheryl

If you can afford too, do both.

These puzzles seem to be made up of so many pieces that even an inadvertant comment from one visit to a doctor might trigger a train of thought that leads somewhere.

Some of the research is so new that many doctors (most) can't keep up, you might just strike a doctor who has recently read something and puts a new twist on your knowledge.

Hmm,

Tough topic, but I'd find somewheres closer to home.

Cardiac rhythm issues have been ruled out. No reason to keep barking up that tree. No EP study has been done--which I don't think would yield anything new.

IMO, this sounds like a real hard to diagnose (duh, sorry for being captain obvious) central nervous system issue, not a true cardiac one. Hopkins I don't think will add anything new. I'd aim for someone that can look at the entire spinal cord extremely close, and can do some diagnostics to take a look, especially in the C spine. We're talking a 3 Tesla magnet MRI (not too hard to find, but the larger institutions have them). EMG + NCV studies too would be interesting.

I know we both have syncope issues Sailing, and it's tough to diagnose, but I don't think the cardios are going to find it for you. For me, yes, I'm heading that direction as it's a natural progression of my problems. But for you, going back to when all the migraines started, sounds like a neurological issue that may be so small that no one has seen.

Next step if they haven't done it is to check for blood flow in the arteries and veins themselves. Pooling in the central section of the body and in the legs can cause syncope when sitting, or becoming upright from a flat position.

I'm guessing unless there's a congenital defect or an obstruction in the great vessels, the vessels are clear.

an obstruction in the great vessels like a steal syndrome or bowhunter's syndrome (physical pinching of the subclavian) would cause syncope.

the one thing that we both share, is that no one can do a test on us in a cath lab in the positions that we faint. they can do a limited range of testing, but nothing that really shows what's going on.

this is not easy.

good luck.
mgb

SM,

Sorry you've had to resort to a wheelchair but it won't be permanent. Just until they can figure out the why it's happening and hopefully find a solution to it. Would rather have you safe than falling and hurting yourself.

I can understand the frustration with the doctors. Marc had some good suggestions and you may be a one of a kind where it takes a while to figure out what it is. Just hoping you have a plan of what to do next.

If you do go to see the doc in Ohio, my uderstanding is that there is a place to get service dogs somewhere in that state.

Anyway my pastor is taking his family to Ohio, at the end of this month, to get his autistic son a service dog. Some of the other people getting dogs at the same time are getting them for seizure disorders.

Hi All,

Thanks again for the support.

I'm inclined to agree that this has to be more neurological than cardiac in nature. The vessel thing is quite interesting. One thing that we have observed is that immediately after an episode, it is impossible to find the pulse in my wrist or extremeties, you can find it in the neck, but it is fast, weak, and thready. This only lasts for a short period of time though. Both parents have observed it and so have my drs. I wonder if there would be a way to check blood profusion to the brain, and the extremities during an attack? Maybe an ultrasound of vessels or some way to check cerebral profusion? It is worth looking into.

Also, I do think that this thing has to be congenital or genetic- I do know that my maternal grandmother always had low blood pressure and always got up slowly because she felt dizzy if she did not. On the positive side, she lived to be 89 and was a wonderful woman and a teacher. When I was first diagnosed with POTS at Hopkins, the doctor said that I probably got the POTs issues from that side and the migraines from my father. I believe he termed it a genetic "double whammie". But no one thought it would get this bad.

I know that Dr. G has some health issues, but I think we may look into some other doctors as well. Definitely the one near us. Cheryl, I know you have told me about the dr in oregon, but could you PM the name again, also the one in houston if you know it.

I am working on some more leads for service dogs. I am trying to figure out if I need a mobility dog or a seizure dog- if only they could train one as both.

Thanks again

Pain free days,
sailingm