ajw4790

Hi!

Have you tried anything other than Tylenol? Tylenol is not an anti-inflammatory, so if it is a tension headache, or involves any little bit of inflammation, muscular etc. Which a lot of the base of the skull headaches are. Tylenol may not help to relieve the problem.

So, if it continues it may be worth it to try motrin, aleve, or asprin etc.

I know with some headaches I will feel unsteady etc. I think these are more apt to be the headaches that are brought on my barometric pressure changes etc. So, I think anti-inflammatories work better for these types of headaches. It is hard for me to try to explain!

Hi!

I don't have any answers, but I think that recently there had been some other threads that discussed this somewhat? So, you may find some info with a search.

I am not sure... Hope you find some answers!

Yeah, I knew someone who smelt gas, when no one else did...

I don't remember having these symptoms, but I know it is possible.

Good Luck!

I just saw we posted at about the same time!

No one hijacked anything! I think it's fun, to compare what we know/ have learned!

Share all info/opinions (okay maybe not all, but close... I don't really need to know your favorite color or movie)!!!

Hi all!

Thanks for all your comments!

The OI/NCS/NMH etc. discussion was also very informative, because some of it was different from what I had been told and had seen. So, it was a new and interesting outlook! I might actually understand some of it better now!

For the whole ADD thing...

Yeah, I still don't know on one hand, but I could see it or on the other hand, my symptoms could all stem from other issues (fatigue etc.....).

It will be interesting to know how it plays out!

Mack's Mom, Your posts are very interesting!!! You have first hand knowledge of all this which is a cool and different perspective! You will have to tell me more about what you have found and your experiences! And definitly how your research plays out!

It was kinda funny, because my PCP said to that she had no specific knowledge of research out there, but there has to be, because she sees it so much. I haven't specifically looked, but it sounds like there may not be any currently.

Let me know if ya'll have any more info!

Thanks!!!!

That is cool!!! Good luck with it! Let us know how it goes!

Also, very interesting... So, are the probiotic supplements better for those wanting to avoid a lot of dairy? Or may they still have the same affect? I just can't stomach too much in the way of dairy. My stomach can be very picky!

Interesting post! It is informative to see stuff on this topic.

I think you made a good choice to wait and see your dr.

Good luck and keep us posted!

Yep, I am good at crashing! I am thinking of specializing!

The whole past week I paid for doing to much the week/weekend before... It was awful. I want to find a solution. So, far haven't... it is hard to keep up and function somewhat normally, because you pay for it later... Then, you get behind in work/chores, and then the best part wear yourself out again catching back up! Vicous cycle!!!

Hi Everybody!

Thanks for your input! It helps to know what others think!!! Keep any input you have coming, I am open to any and all feedback!

From people's responses I feel better about what I have done so far and on how things are going. So, thanks!!!

But, anyways so like a month ago my PCP started in on that she thinks that some of my symptoms/issues are ADD and not necessarily POTS etc.

Her solution at that time was give me a script for Concerta and have at it! I really want to be on the least meds as possible, and definetly avoid ones that are so addicting etc. So, I held off until I saw my ANS dr. and he said he wasn't so sure on the diagnosis, and to wait on the meds. (I agreed) But, he said to check because it was a possibility, and to do neuropsych testing to see if it was ADD. So, I am doing that in December. So, definetly if that says no, I will not go on the meds. If it is yes, I think I will see if there are any other things to try before Concerta, and then maybe give that a try.

So, this past week she was adament all your symptoms are ADD, I can not help you if you do not take the meds... that is the only solution. She claimed she knew ADD well, b/c all four of her kids have it. I started to get suspicious then... Then, she made the claim that all her patients will the vasovagal symptoms have always also had ADD (I was like okay... I guess its possible...but really?). I am still not really sure how much she really understands about POTS, because she always goes back to vasovagal/NCS and not POTS (which was diagnosed by tilt table). So, not sure on where everything is coming from???

She has referenced one particular other patient with POTS and said they came in with a wheelchair and with exercise etc. they got to feeling better and out of the chair. Other then that it was just her blanket statement of that EVERY patient she has ever seen with this has had ADD as well. So, I figured she had a few?

Thanks for your help!!!

Hi all!

I was told yesterday by my PCP that she is very sure that I am ADD, interesting to be finding this out at 23 years old!

Anyways, she said that anyone she has ever seen with vasovagal/POTS types of syndromes has ALWAYS had ADD too. At least according to her.

So, I was just curious to how many people on the board have been diagnosed ADD?

Any hints, or how this has impacted your treatment?

Any thoughts etc. to why ADD may be more prevalant with POTS etc?

Thanks!

Those days are considered to be due to adrenaline rushes? Interesting... Yeah, definetly know what your talking about, glad I am not the only one.

I just wish they weren't so few and far between!

Good description Mrs. B. that helped to remind me of what everyone is always talking about as well!

I needed a refresher course!

Glad it worked out for ya!

Its good that now they have evidence to what you have likely been trying to tell them all along. Sometimes it takes that to "wake" them up to what is going on.

Hope they find some answers for you!

Wow, it sounds like you are going through so much! I unfortunetly don't have any words of wisdom. I hope that you get answers and that everything works out the best it can.

Good Luck!!!

Glad your home!!! Hope everything goes well!!!

Sorry I don't have any suggestions other than maybe see if Vandy would work now, since it has been a while. There may be someone in Atlanta and have I seen before people post on places in Alabama?

Good luck! I hope you find someone.

Hi again!

My arm finally got to feeling better, I had wondered if it was because it had gotten a lot colder kind of quick. I had wondered about Raynauds etc. Or if it was the neuropathy. The nerve pain had actually gotten better! Then, within the past day or so it is coming back, so maybe it is linked.

My ears keep popping which is more of an annoyance then anything, it seems every couple of weeks I get it for a few days. Hopefully it will be over soon.

Fun times!

I think the caffeine in Dr. Pepper acts as a stimulant which is also part of it, but this maybe as well.

That link is interesting! It has many uses. It can be weird when you look up all of what is put into things. And scary!!! (Happy Halloween!)

That sounds like an interesting study!

If you end up still needing someone, I may be able to do it.

I just am not sure how reliable I would be at being able to take BP etc. at set times etc. with classes etc.

But, if by the time you start you need someone else, I can try and see if I can help out. I am in Ohio, so it would be a different location.

Hope it goes well!!! You will have to tell us the results!

Yeah, I can get some of the same aspects, but not nearly to that degree. I can get some symptoms with anything that causes an abnormal exchange of oxygen. Coughing, talking a lot, singing, laughing etc.

It can be very annoying! I guess I just have to pay more attention and try to avoid any issues! But, luckily it has never been too bad.

Good luck with everything!

Hi!

I am sorry you had such a rough time! I am not sure that I understood everything that you were saying... But, you went to the ER b/c you couldn't move your legs? And there was swelling? Was it on the right and left?

For the reflexes you said that they got your patellar (knee) reflex, but not lower? That is not abnormal, the achilles reflex is hard to get sometimes, even on normal healthy individuals. So, I really would not worry about your reflexes they sound from what you said fine. We are taught in our program to perform and assess reflexes, so from what you said they sound fine.

I am not sure about the three minutes upon standing. That would give your system more time to recover, which for many of us would mean that it would even out.

Your BP and HR were a little bit high, but could have been due to the stress of being in the ER and whatever was going on. It was not necessarily anything wrong. Again, I think "healthy" people may have the same reaction in that situation, due to the whole white coat syndrome etc. (Where even if you are not nervous etc. around drs. your body naturally is somewhat anxious around drs. and medical situations.)

I think the important thing is to take a deep breath and try to destress a little bit. You sound overwhelmed. This could raise your BP etc. and make you feel worse. Maybe see if trying to relax etc. will alleviate some symptoms. Then, this way if you continue to have symptoms with your legs etc. You can go to your dr. and say that you have had these symptoms for so long, and you have tried this, this, and this type of thing so then they can rule out stress etc as a cause.

Doesn't paralysis sometimes come on with migraines? Do you get migraines?

None of this is to say that you don't have a ton going on, but sometimes I have to remind myself to try not and worry so much etc. All of what you went through seems awful, and I hope you get some answers! I hope someone listens to you!

Hope you get to feeling better!!!

Wow, it sounds like she is going through a lot! I hope it gets better! I don't know if all of that was present before the medications, but I know I have had some of these symptoms increase with meds. For an 11 year old it looks like she is on quite a bit. Also, the vestibular issues would also be worth looking into.

Good luck!!!

I agree with Mrs. Burschman. You should say something so later it doesn't look like you were trying to hide something. But, don't make a big deal out of it and say that it shouldn't interfere to much kind of a thing, but you may need to do somethings slightly different then others (i.e. sit down more in btwn standing).

Good Luck!!!