cvincent

Hi everyone,

I haven't been on here in a while. Just wanted to update you on what I found out during my appointment with a doctor from U of M.

I thought that they might want to do more tests and such but it ended up just being a regular appointment. I seen a cardiologist who is a sub-specialist in POTS. He didn't really have a lot to say, but did suggest that I wear compression hose and increase my salt and water intake. He also wants me to eventually go off all of my meds. Now, when I went to Mayo in 06, they told me NOT to increase salt due to my high blood pressure. I also have tachycardia along with the high bp and that is why I am on the beta blocker. However, he thought that if I went off of my meds, then I wouldnt have the side affects, especially from the beta blocker, which makes me tired/sluggish. He told me I will just have to monitor my blood pressure and heart rate. So overall I guess I feel good about the appointment. I like the idea of going off the meds, however I am a little concerned about how high my heart rate and blood pressure will go. Before I went on the beta blocker I ended up in the ER twice in the span of 5 days because my bp got too high. So I guess I will have to wait and see. I already got fitted for my compression hose and will be picking it up tomorrow. Also, since it has been warmer out, I have been feeling quite a bit better than I did this winter. My symptoms seem to improve with warmer weather . I will be going back to U of M for a follow-up appointment in a couple weeks. Hope everyone is doing well,

Candace

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? - yes

2. Have you ever been diagnosed with EDS or suspect that you may have it? - have not been diagnosed but have suspected it

3. Do you experience symptoms when lying down even after a night of sleep in your bed? - yes

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? - no

5. Have you ever been informed by a doctor that you have low blood volume? - not yet

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? - yes

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? - yes

8. Did your POTS arrive suddenly? - yes

9. Is your skin pale? - yes

10. Please the top 6 worst symptoms that you experience with POTS: - fatigue/exhaustion, palpitations/tachycardia, pain everywhere, nausea/loss of appetite, pre-syncope, chest pain/shortness of breath

I was diagnosed with severe sciatica this past fall. I had an x-ray, MRI and blood work done. The only thing they could find causing it was inflamation.

Hey All,

Lately, every few weeks or so, I get moments where I feel incredibly queasy and either throw up a number of times or dry heave. Fairly soon afterwards, I feel OK -- so it doesn't seem like a stomach bug or anything. But I feel awful before, during, and after.

This is all new to me and I wanted to see if this is POTS related or if anyone else experiences this?

Thanks all, be well.

I haven't actually thrown up yet, but I do get really bad episodes of nausea that are accompanied by dry heaving. I have had this ever since I became sick. It was the worst symptom I had for the first year of being sick.

Candace

Hey everyone,

I just wanted to let you all know that I had a great day today. Me and my mom and twin sister, ( who came up with her husband to visit ) went out for lunch and went shopping at the mall today. I had my wheelchair delivered on thursday, perfect timing. I took my wheelchair today and my sister pushed me around while we shopped. I had so much fun. I haven't been able to do this since before I became sick. Without the wheelchair I would have had to stay home. It did wear me out being out so long and it was hard to sit for such a long time, but it was all worth it. I felt truly happy today. I haven't felt that way in a very long time, and I think it's because I felt like I actually had a life. I felt like myself again. So yeah, it was awsome. I'm so thankful that I was able to get this wheelchair so easily. God's taking care of me.

If any of you are considering getting a wheelchair, or are having trouble deciding because you feel like you would be embarrassed, I want you to know that I was in the same position. But today when I was able to be with those I love and do things that I haven't been able to do in such a long time, the thought of being embarrassed went completely away. I was so happy that I could get out and live my life that the thought completely disapeared. It was soo worth it.

Candace

I know that a lot of people have trouble with being too hot, but I seem to have a little less of a sense of hot. The first time I realised it was when I was being tested for dysautonomia, and the doctor put a thing on my foot, and said before he did this should feel hot. So he did my left foot, and I nodded my head in agreement, then he moved it to my left foot, and I began to nod my head as I was just expecting it to be hot, but I didn't feel anything. He had to keep it there for probably around 50 seconds before I even began to feel anything. I have also gotten 2 really bad burns from my heating pad, and I didn't even feel that it was burning until the skin was coming off. Then yesterday I was touching a pot, that was on the stove to see if it was getting hot yet, and I said no it's not ready, then my husband touched it and said thats hot, can't you feel that? Does anyone know is this a POTS thing?

Suzy

Suzy,

Since I became sick, especially lately, I've noticed that it takes me longer to realize how hot things are. I usually can't feel how hot things are untill they are hurting my hands. I have to be careful whenever I'm taking something out of the microwave or when I'm cooking. Just yesterday I had my moms straightener turned on and I touched it to see if it was hot yet. I couldn't feel the heat untill it started almost burning my fingers. Also, whenever I take a shower I have to have the water turned almost as hot as it will go. I can hardly feel the heat from the water, and when I can it doesn't feel hot enough. Maybe all this is related to nerve damage. Who knows.

Candace

Hey everyone,

I ended up taking my script to the medical supply store. When my mom and I got there the lady beind the desk immediately recognized my mom and vise versa. They went to high school together. So the day after we dropped the script off, she called me and told me that the chair that my doctor prescribed was going to be really hard to get because my insurance was going to make me jump through hoops to get it. She told me that I had to have my doctor do all these things like writing a letter, having an annual script, and a couple other things. So by the time I got off the phone I was already fighting back tears. I've been so much worse lately and have basically been confined to my house. Well, about 10 minutes later, I hear the phone ring. It's for me, and it's my mom's friend from the medical supply store. She tells me that she actually found another chair, not the exact same one that my doctor ordered but only 2lbs difference in weight. She said that because the other one was a custom chair, insurance was going to make it really hard for me. But this new one she found, was actually listed as a standard chair. But the only difference was 2 lbs! I asked her if my insurance would cover it, and she said they did, no problem. They will call me this week when it comes in. She told me that because the other one would have taken 6 to 10 months to get approved for she thought this one would make more sense. How awsome is that? what an answer to prayer

Candace

I became sick after an episode of anaphylactic shock that put me in ICU for three days. After that I was never the same. ( and we still arent sure what caused the alergic reaction )

Candace

Can you get a second opinion??

There is a med Xyrem which is modern version of GHB.

I was in a GHB study in the mid 90's with a doc that found GHB GREATLY controlled Narcolepsy and FM and alpha delta sleep problems..and INSOMNIA--weird to help all of those, I know. I took it for insomnia but it did not help..this was pre ANS dx when we called what I had CFS and FM.

This drug is NOT a stimulant but works to help a patient fall asleep & get restorative sleep and help the patients body create natural Growth hormone while sleeping...Provided you are INDEED Narcoleptic..or have the other problems listed above...it did not help my alpha delta sleep either.

Was it your sleep doctor or PCP who gave you the Mayo results of narcolepsy blood work? if PCP you may want to discuss your questions with the Sleep doc face to face if possible.

Dont' be afraid to ask lots of questions of things you do not understand. Good luck with getting more details.

It was my PCP that gave me the results. I do have an appointment in June with my sleep doctor, maybe they will figure something else out. Thanks for your help

Candace

So some of you may recall my post a while back about my sleep study. My sleep doctor had suspected narcolepsy and after we got the sleep study results back they told me that I didn't have all the signs of narcolepsy, but I did have enough to still suspect it. So then they had some of my blood sent to Mayo to look for genetic markers for narcolepsy. Well at my doctors appointment yesterday I found out that I apparently have narcolepsy. weird. They can't really treat it at this point because I ended up not being able to tolerate the one stimulant that was safe enough for me to take. Oh well, I guess it's good that I don't have the more severe symptom of falling asleep during a conversation, or while driving. ( I still think it's weird that I have narcolepsy, without having those symptoms )

Candace

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

I have noticed the same thing. If I get less than 8 hours of sleep I tend to feel better during the day. But here's the thing, I can only do this for a couple days before I crash. So is it worth the few days of feeling a little better? or is it better to just forget about it and avoid a crash? hmm, I can't seem to find any common ground with this. oh well, that's how it goes I guess.

Candace

I made lots of phone calls once I got the script from my doctor.

I called the insurance company and asked how the process goes.

They put me in touch with the medical group that would handle it.

I called the medical group and asked how the approval was coming along.

They kept me posted and also put me in touch with the medical supply company.

I think all told it was about a month.

But I did start over once in the middle of the process, because they approved a "standard chair" and I told them there was no way I'd be able to handle the weight, and I would need a "light weight" chair. So they gave me the code I would need for my doctor and with a few more faxes we were on our way again!

Unfortunately I lost my chair yesterday, due to insurance changes. But this time, with new insurance, I am buying my own chair (and charging it against my high dedictable) and I should have the chair by the 20th.

Good luck and keep us posted!

Thanks EarthMother, that info is very helpful. My doctor did write a prescription for an ultralight-weight. I'm really hoping to get this. I have been stuck at home for so long now because I can't get out anymore. I did manage to get out of the house to go to my doctors appointment yesterday, but after walking only 50 feet ( which was pushing it ) the nurse said my heart rate was 160. The most I can do without making myself really sick is getting around my house, and I have to rest just from doing that. I am really hoping for the ultra light weight because I'm only around 97 pounds. I hope my insurance will cover it. I have medicaid/molina . I will have to call them like you suggested and see what they say. Thanks again for your help, I'll try to keep everyone posted.

Candace

Dani,

Since I was diagnosed four years ago, I have only gotten worse. That doesn't mean that you will though, everyone's different. We just gotta keep fighting.

hang in there,

Candace

It's hard to say how long it will take. It depends on your insurance company, the extent of your disability, and how clearly the paperwork is filled out.

I hope the process goes smoothly for you!

Rachel

ok, thanks

Candace

Hey everyone,

My doctor wrote me a prescription for an ultra-light wheel chair yesterday. I was wondering how long it takes to get one once I'm approved? He said it will take a while. Any input would be great. Thanks

Candace

Dani,

I just recently turned 20 and completely understand what you're going through. Your post could have been written by me. If you want to send me a message or anything don't hesitate. Hang in there.

Candace

Again, thank you all and by the by.....is low wieght and weight loss a common thing with potsies? Is this due to our HR always being high and burning calories?

Kimi,

I'm not sure how common it is, but ever since I became sick after I turned 16 I have been underweight. I weighed more when I was 14 than I do now, and I am 20. Right now I only weigh about 97 lbs. I am 5'6". When I first became sick I lost about 20 lbs in 3 weeks. Not good, especially when I'm tiny to begin with. The worst I've been since I became sick was around 90 lbs. It doesn't really seem to matter how much I eat, I tend to stay under 100 lbs. When I was 14, ( freshman in high school ) I weighed almost 120 lbs ( healthy for my age and height ). I was very active and involved in 5 different sports. those were the good old days.

Candace

3/27/2009---Cardio Dr increasing beta to 40 mg daily as needed but, will not commit to POTS as I have rapid HR while lying down.

Hi, welcome to the forum.

Currently my heart rate has been controlled pretty well on bisoprolol. Last year though, when I was taking propanalol, I had very high heart rates when laying down. Sometimes they were higher laying down than when I was sitting up. Not everyone with POTS is exactly the same. Some drs would say that a person can't have POTS if they have high bp, but many people here that have POTS have high bp instead of low bp. Hope your cardio will look into it more.

Candace

I took propanolol for a couple months. Worked a little at first but I had to keep increasing the dose. Ended up not helping at all after a month or so. I switched back to Zebeta ( bisoprolol ) after my insurance changed and it works great.

Candace

Congrats!!

I'm glad you both are doing well.

take care,

Candace

Pokey

,

They only gave me two papers with the results on them. Most of it is in graphs and such, and the rest that is in writing is what I posted on here. Would my doctor recieve a more detailed report?

Candace

I've had 2 sleep studies now. I have virtually no stage 3 or 4 sleep, which is the restorative. Every single thing was abnormal except I don't have apnea.

The first result was reported as normal and the second as no stage 3-4, but no hypersomnia, although i fell asleep at all the 2 hour intervals, but like you did not have REM. I just gave up. morgan

Morgan,

So did the doctor ever mention what could be wrong? If everything was abnormal, why didn't they do anything? I'm really sorry, that must be so frustrating.

Candace

I know we all struggle with our sicknesses. Our future is uncertain ( as is everyone's ). Sometimes, a lot of times, it's hard to have strength to get through today and to hold onto hope for tomorrow. I wrote this poem a while back. Hope it can encourage someone.

Hope for Tomorrow, Strength for Today

It seems that no one sees,

that no one understands,

but through it all Lord Jesus,

I can still feel Your hands,

holding me ever close,

and showing me the way,

teaching me to trust,

and helping me to say,

that even though it hurts,

and I can hardly understand,

may this all be for Your glory,

for all that You have planned.

Not my will Lord,

but have Yours be done,

I know this won't be easy,

nor will it be fun.

But as long as Your close by,

and showing me the way,

I'll have hope for my tomorrows,

and strength for my todays.

1/14/09 - Candace Vincent

To Him be the Glory

There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

This caught my attention ... I wonder why you'd wake up for this ... I'd have to google hypopneic event ... Is it possible to have sleep apnea without snoring ? Or to have just a little sleep apnea ?

I was looking at this thread because I have nocturnal myoclonus which means my body jerks as I go into REM. Did your sleep study look for this ? I didn't see it ... I'm not sure why this happens but I'm assuming it was related to gluten since it's not happening now unless I accidently eat it.

Also, I had the daytime test for narcolesy the next day too but since I jerk myself awake when entering REM of course I tested negative for narcolepsy. how did the doc miss that one ?

I took provigil about 5 times before giving up on it. It worked great at keeping me awake but it kept me awake most of the night too ...

Not to beat a dead horse, but within a week of getting the wheat out of my diet I stopped nodding off like this ...

However, in the last year or so, I've found out that if I eat too much chicken or turkey (tryptophan) I have excessive daytime sleepiness .. I went on a turkey and dressing eating binge once where I ate it for a few days in a row and just could not wake up ... That was how I figured this one out ..

Hot flashes are waking me up nowadays, so I've been experimenting with melatonin but read that chicken / tryptophan converts into melatonin so I decided to try it instead ... I don't know what's worse ... waking up at night or being too sleepy to function during the day ...

HTH ... Marcia

Marcia,

You know, I also wondered about the respiratory related arousals but she ( the nurse practitioner ) didn't really mention anything about it. At least, she didn't say it was abnormal. I guess I probably should have asked some more questions. I was pretty tired when she was explaining everything, that sleep center building is always so quiet and peaceful She did say that it didnt show any evidence of sleep apnea. She also showed me that whenever I changed to a different stage of sleep, I would wake up.

I do know that you can have central sleep apnea and there isn't any snoring with that. However this form is generally more rare. In central sleep apnea the problem isn't with snoring or with your throat. It happens because your brain just stops/forgets to tell your muscles to make you breathe. Central sleep apnea is usually related with neurological diseases.

I'm not sure if they looked for nocturnal myoclonus or not. I know that going into the study they were already looking for narcolepsy.

During my MSLT I also did not go into REM sleep during my naps. But the thing is, the naps were only 20 minutes long. So was that even long enough for me to go into REM sleep? I know when I'm at home, if I take a nap I usually end up sleeping for 2-5 hours. And I happen to sleep really well during naps. I hardly can remember my dreams and I don't usually toss and turn like I do at night.

I am on 100mg of the Provigil right now and then after two more days they want me to increase to 200mg. I'm a little concerned with this because it has already raised my bp a little today. I also hope that it doesnt keep me up all night...wouldnt that kinda defeat the purpose? if it kept you up all night then you would be just as tired the next day and that would just end up causing more problems with your heart and bloodpressure because your heart wouldnt be getting the rest that it needs...lol what a mess

Candace

Well your post is very much appreciated. I am going through testing again.. to figure ME out !! Sorry for ALL you have been going through.

I had a sleep study done last year and it showed sleep apnea..(I also have daytime apnea) but whatever it takes to qualify for the daytime MSLT test I di not qualify. The whole purpose of the sleep study was to confirm one neurologists suspicion that I had narcolepsy WITH capaplexy that brings me to the ER all the time. And the "spacing out" I do is actually MICRO SLEEP..which the brain shuts down a few seconds or more to catch up on deprived sleep. Clever eh? ONLY...this is where I make mistakes..BIG ones sometimes at work. I just did again last week..and I was so embarrassed. Eventually it could cost me my job. And I have no one to support me.

So now the Autonomic neuro wants ONLY the MSLT performed if possible. BUT unilke the TYPICAL cataplexy precursors of EMOTION..laughing etc that set off typical Narcolepsy WITH cataplexy. What leads to these episodes (N with C) I guess..is AUTONOMIC symptoms.. tachy..Bp goes up high..usually and I feel like I will lose consciousness. Then if I dont take my emergency betablocker..I end up unable to move..remain alert..but.. I can HEAR. Thats why they really think I have cataplexy.

What I am afraid of is being diagnosed and losing insurance in future.. or..driving privileges.

OH.. I was on Provigil..when they thought my chronic fatigue was part of MS..the neuro had to get me qualified..I loved it..but if I took ONE pill too late in morning then I was up till 2-3 AM..thats how much a stimulant it was. But since I NEVER had energy.. I thought that was great. Cant remember if it had any side effects..like higher BP or not. I stopped only becuase I was seeing a nutritionist and trying to use less and less man made meds.

PLEASE stay in touch.. After seeing my PCP in a few weeks..I'll see if I really want to go through sleep study or not. What will it help? They will ONLY give me meds anyway... I just dont know

Warmly, Jan

Jan, I'm so sorry you have to go through all of that. It sounds like you have a lot of stuff going on. I'm surpirsed that you didn't qualify for the MSLT the first time. As for getting the sleep study or not, it might be a good idea because they might figure out what is really going on. I do tend to feel the same way that you do though. I don't like being on a ton of meds and I am sometimes hesitant to get tests done. I just feel like, what's the point? they won't be able to cure me and they will probably just stick me on some meds that cause side affects. I think though, that if you are showing symptoms that warrant getting a test done then it probably should be done. At least having the proper diagnosis and having an answer would help. And if you did get the sleep study done and they decided to put you on some meds, you could always see if they helped. If they didnt then you could talk to your doctor about going off of them. Who knows, maybe they will figure something out to help you feel better. I have been learning lately that accepting this illness and this new kind of normal isn't giving up. I always thought that if I accepted it, then I would be giving up, but that's not true. Accepting this means that I am going to live in this new kind of normal to the best of my ability and to keep hoping. Getting tests done it often stressful, exhausting and a lot of times can be depressing, especially when they come back normal and once again we have no answers. But if I never hoped for something better, then I might miss that one opportunity where one test could have made a difference. I know that for me, I can rest in the fact that I don't have to worry about my future or what the tests will show. Because God already knows, and He is in control. Keep your chin up and keep fighting. Going through all of this has undoubtedly made you a stronger person.

Hope some of this helped,

Candace