futurehope

Never mind. I straightened out my own skewed perspective by realizing that there are people in Haiti right now who are struggling to survive. I have no right to think anything is difficult for my emotions. I do not know what difficultly people have every day to survive? My problems seem as nothing. Sorry for the original post.

Hi,

My husband used to ski before I knew him and he hasn't done it in 30 years. He decided for his birthday to arrange a Fri-Sun ski trip birthday combo for him, me, his brother, my sister-in-law, my step-daughter (his daughter) and her husband.

I know skiing is out of the question for me. The ride up there (first to New York City from Baltimore, to pick up the kids, and then on to Connecticut), is a big deal, all day thing for me. Then, we turn around and do the same thing in reverse, two days later.

My husband wants me there to share in the birthday dinner with everyone. He, his brother, and my son-in-law all have birthdays near each other. At first, I said "fine, I'll go". But as the time is getting closer (next weekend), and I realize people will be out on the mountain Friday night and all day Saturday, I'm getting depressed. My husband said I'm supposed to "enjoy" the surrounding countryside, and maybe sit in the lodge, or read a book, or check out the town. (I have no idea of the surroundings and will not be able to reach anyone by phone while they are skiing).

To me, it's like asking a Vietnam vet with war injuries to come on out and enjoy what everyone else is doing. I'm an invalid who cannot ski. I am aware of my limitiation and on a normal basis, I can mentally handle anything that comes my way.

But........

the idea of sitting there at dinner Saturday night, while everyone is rehashing the "great" times they had that day and prior night skiing, seems like a recipe for depression to me.

Like I said, I'm normally totally adjusted to my disability. But, this seems to me like banging my head against a wall, and then telling myself how good it feels to bang my head.

I do not know how to mentally adjust to being amongst 5 other people all engaged with an activity that I cannot participate in. If there were snow tubing, I might have tried that, but there is no snow tubing where I'm going.

Can anyone set my head back on straight? Like I said, I normally do not put myself in situations where I have to feel left out, unless it's a relatively short amount of time. This is a weekend......and I'm having trouble adjusting emotionally to being left out for the entire time.

I'm also feeling selfish for anticipating how difficult this will be for me emotionally.

P.S.My husband's response to me is to tell me not to be a "stick in the mud". Inability to ski should not keep me from a good time, so he says.

Stay in the front. Do not ride on buses unless absolutely necessary, and then ride in the front of them.

Hi, before you go to the neurologist, you may be interested in asking the secretary if the doctor has any patients with NCS or orthostatic intolerance so you'll know if he can be of any assistance with your POTS. Also, no matter what physician you go to, you won't be able to do anything about it anyway because of your pregnancy, I suppose.

Maybe some other POTsies on this forum, who have gone through pregnancy can help you?

I'm with you. I'm coming down with something myself. I don't feel well, and I haven't felt well for days. I'm taking my temperature and waiting to see if it's the flu. I have a 99.3 now, with a headache and general nausea and the "blahs". Oh well, like I said, I'm with you.

I find that my body "knows" I'm sick before I do. I can get certain different "hints" that my body is fighting something. For me, my interstitial cystitis may start giving me problems (feels like a urinary tract infections, but is not). I may feel run down more than usual, or just feel "off". I try to get more rest when this happens as it may mean that my nervous system "knows" something that I do not.

I forgot to mention, another thing I have had happen to me prior to "knowing" I am fighting an illness is, I get a "vertigo attack". It may last for 1/2 second, but I know something isn't right and that I may be coming down with something.

Oh yes, recovery is prolonged since I've had POTS.

I hope you get over the cold really quickly.

Sophia3,

It's called "cutaneous allodynia", associated with migraines. There's also an "external compression" headache, that is relieved after removing the hat or headband.

After a bit of research, I'm attributing this trait to something that occurred to my nerves from POTS. I also have brought on a migraine from wearing a hat. Prior to POTS, I had only 1 migraine in my life. Since POTS, I've had 2 - 3 more, and the above-mentioned scalp sensitivity.

And, BTW, no matter how loose feeling the hat, my scalp nerves eventually react. I'm also more sensitive to sounds and to smells than prior to POTS. If a sound is to loud, it hurts and bothers me. If there is a certain chemical odor, I much more prone to getting a headache than before POTS.

Ericka,

This trait keeps us from wearing our favorite hats or headbands. Boo!

I'm chiming in here, but pleading ignorance. My Achr antibody titer has been elevated for years, yet I do not display Myasthenia Gravis. I do not know if my test involved muscarinic and/or nicotinic receptors or both?

I'm staying tuned to this thread.

I've noticed this trait since I've been diagnosed with POTS. I cannot wear a headband or a hat without getting a migraine type headache. I did not used to be this way.

Now, I have to wear hoods in the cold weather. And, forget about wearing a headband to keep the hair out of my eyes...

I wonder if this is something I acquired from POTS, or something else all together?

Any ideas?

Wow! You have to be courageous and brave because it sounds as if you are in a battle! Stay focused on the eventual outcome and try not to be overly concerned about the present moment, but on the future rewards.

Keep us posted.

Cathielu,

I'm so happy for you that you managed to improve your quality of life! Congratulations!

For me, my symptoms encompass more than orthostatic intolerance. I can feel badly from lying in bed all night, probably from brachyardia or poor circulation while supine. I tire easily. I have digestive difficulties. My body is sensitive to medications and I get out of breath from speaking or singing. I could go on, but what I'm trying to say is....I do not have simply orthostatic intolerance......my problem is autonomic nervous system malfunction....in any position...which includes other things besides standing. For instance, I have heat intolerance and easy dehydration, and I dislike bending over.

I wrote this post because I suspect that for many of us, addressing the orthostatic intolerance issue is not really correcting all the other issues that can be manifest with autonomic difficulties. We are different from each other.

But, I do not want to minimize the success you've had from not being able to stand to finally being able to. That is rewarding!

Oh, yes, hibernation sounds like a good idea. I'm definitely feeling the effects. I'm worn out because my body is working so hard to stay warm. I'm not getting enough Vitamin D via the sun, so no energy. It's miserably windy and cold outside. I really have no desire to do anything until Spring.

Sue1234,

My GI doc did a hydrogen breath test on me. I was mentioning my usual bloating, crampy intestines, etc., to him, and his eyes were glazing over. But when I said to the doc, "you know I have autonomic dysfunction..." , it's like a lightbulb went off in his head, and then he came up with the idea of giving me the above test.

I tested positive.

My Take On It

No, I do not ever ask myself if this is as good as it gets? Personally speaking, I have no idea if I will get better or not, so I do not ask the question. I doubt any doctor knows exactly what will happen to me either.

What I do is:

1) adjust as well as I can to my present reality ..... I've learned much on this forum.

2) pursue other avenues of treatment if they seem reasonable..... Again, this forum is invaluable.

I suffer from RLS myself, so I am reading this thread hoping for an answer.

I want people to know the few things that I already know about RLS, and that is:

There is a blood test that tests for serum iron, and if this is below a certain number (70, I think?), even when it's in the normal range, you may need supplementation as this lower iron score can contribute. You do not need to be diagnosed with anemia for this to occur. I have not found this of benefit to me personally, because taking iron pills caused problems of their own.

Certain medications can make RLS worse. I am on one that does this. It is an antihistamine called hydroxyzine HCL. Other antihistamines can worsen you as well. I was told the best one for RLS is allegra. I need the one I take because it is a great help for my interstitial cystitis.

I am going to ask my doctor about the B-12/folic acid combo mentioned on this thread. Normally, any vitamin that says Folic acid, hurts my stomach, esophagus and bladder, so I am necessarily limited.

Lina,

Again, I want to thank you so much for giving me some more info. I live in Maryland, one of the "high-tick" areas on a map, though not on the Eastern shore where the map shows the greatest concentration.

I may pursue this entire new path with my new PCP who is in the Hopkins system and has already accepted me as a patient.

For me, the interesting thing is, I do not have what I would call the "usual" aches and pains that lyme people usually have. I have POTS, IC, irritable bowel, restless leg and GERD.

But, honestly speaking, I forgot all about my year 2000 test, then dug it back up, and noticed the positive, and thought..."you know, maybe something is going on here". That's when I tried to contact the LLMD and got rebuffed.

The sec'y had taken my name/address/phone before I got huffy and said "never mind", so I don't what what I'll do there.

Can I have lyme, or co-infections, if I do not have the aches and pains usually associated with lyme? TIA

BTW I have definitely been on the Eastern shore in high tick areas and remember when we stayed in an old house there, I got a rash all over and was told it was fleas?!

Hi, Lina,

Thanks so much for responding. My IGG (?) band that was positive was 41. The screen was positive and I had the one band. This was back in 2000 before my POTS really reared its ugly head.

As for lyme literate doctors, I tried to make an appointment with one in my area with a good reputation. The sec'y asked for my insurances? I have a primary with my husband and a secondary with Medicare (for disability).

She heard the word Medicare and refused to even set up an appointment? I kept saying "Medicare is my secondary. You (I) don't need to involve yourself with Medicare. I'm going to be paying you $$$: why can't you just take my money and forget it? I got so upset with her ignorance that I said, "forget it".

I heard from other lyme literate people telling me that all the good doctors won't take me because of Medicare. Medicare is my secondary. If I pay $$$,, why do they reject me?

So, I'm going no where fast right now and I cannot see a lyme literate doctor (supposedly).

Situation:

I have 2 insurances, one with my husband, the secondary is Medicare (for the disability).

I called up a "lyme literate" doctor in my state to set up an appointment.

She asked for my insurance(s)? I told her.

She said,"We don't accept Medicare." I said "Medicare is my secondary. I have other insurance as my primary."

She reiterated, "We don't accept Medicare." In continuing to ask her questions, I found that this doctor is one of those "out of the network" doctors that expects me to pay in full up front and (after they would file for me), I would get reimbursed.

I continued being a bit of nuisance and said,"I will be paying you my own money out of my own pocket. Why can't I be a patient of yours if I'm paying? I won't file Medicare. You won't file Medicare. What's the problem?"

"We don't take Medicare patients."

Then, I went to a lymenet forum and asked about this, and was told by one responder, "You won't find any Lyme literate doctors in your state that take Medicare patients."

I am totally baffled?????? I will eventually understand what is going on here, because right now, I'm missing pieces of this story, and it does not make sense.

I'm willing to pay out of pocket for medical services. Medicare is my secondary insurance, and this physician won't take me as a patient because I'm a "Medicare patient".

Please, anyone with some insight on this......EDUCATE ME.....I know there is some logic in this story somewhere?!

I was once wearing my heart rate monitor during walking exercise in the mall, and my HR did the same as yours did. It jumped way up. I freaked myself out.

Then, I found out on this forum, that the watches react to other interference, though, I cannot remember what just now??

I quit worrying about it. In my case, it was the watch, not me.

Hi,

I'm glad you are feeling better. From what I've read over the years (The Yeast Connection, for one), yes, an overgrowth of yeast can make a person appear drunk.

If I were you, I would forego the fake sugar soda pop altogether. Fake sugars can cause their own sets of problems.

It is very difficult to find a mainstream doctor who will even listen to anything about "yeast overgrowth". If they cannot find true medical studies, then they don't take it seriously.

I've tried Nystatin in the past, but I found it made me quite ill at first as I had the "die-off". I also think the medication is hard on the stomach.

But if it is working for you, great!

What kind of health care practitioner prescribed it for you, and how much are you taking?

Keep in mind, that changing your diet to be healthier, in and of itself is beneficial.

Do the above test signify that I should see a lyme literate doctor? Any ideas?

Klonopin was my favorite medicine. I felt great when on it. After about 4-6 months, I needed a higher dose. I decided to wean off: that was my choice. They are still in the house when I need them. I love them, but the effect is short-lived. I felt terrible for about 4 days while getting off them, though, even though they weren't "working" anymore.

As for other meds, I dislike the side effects more then I dislike the original problem, so I am drug-free for my POTS right now.

I do remain on meds for allergies, though I have to take breaks from my nasal spray or it quits working. I remain on meds for GERD and thyroid.

I totally understand how this feels as I have this symptom. It makes no sense to me why talking makes me feel out of breath and exhausted? But, it does. Singing is impossible.

I do have some "good" days in which I can do a bit of singing, and I can talk with no problems.

I attribute the problem to POTS. I'll lip synch at church when I'm supposed to be singing. And I'll refrain from talking, if possible, when I'm feeling SOB. This is part of my "new normal".

Stace915,

I had the opposite effect than you when I was in Sea World and Cypress Gardens. I did not use a wheel chair. I rented a motorized scooter for the day (usually rented when entering the park). Everybody gave me special privileges, like sitting in the front row, getting out of my way, just being nice. I could thoroughly enjoy my day. I used the basket in front to hold my water. I carried an umbrella to keep the sun off of me. Next time, I will have a squirt bottle with water to cool me off when needed.

I would recommend what I did to other POTsies. It was well worth it to me.

Kayjay,

Did you mean telogen effluvium, by any chance?

I have been diagnosed with chronic telogen effluvium (hair falls out earlier in its cycle due to ????), and androgenic alopecia, (female) pattern balding. The diagnosis was via a dermatologist and a culture of hair follicles seen under a microscope.

Telogen effluvium can be a discreet episode, due to something like surgery, or childbirth, in which case, it resolves itself to normal, or it can be chronic, like I have, due to ???? in which case it is not going away.

My hair began going grey in my forties, and I'm letting it go silver now. I used to color it, but I like my natural color.