Maxine

I'm thinking it would be a lot better to treat depression then a lot of those other SSRIs and other drugs used for depression. I think a lot of those drugs are poison to some. I take such a small dose of wellbutrin to help raise my BP, so I sticking with it for now, because I'm nearly non functional without it.

The only problem with weed is that smoking it would cause damage to lungs----lots more tar then cigarettes. I smoked cigarettes for 15 yeaquitting in 1990, and smoked pot for fun in the mid to late 70s, and in the 80s too--- . I DID notice other types mellowed me, and others made my heart race, and made me paranoid. As I said my brother who passed away from cancer this past Feb. smoked it while out on a gig one night and he ended up in ER with heart rate over 230 bpm. It's possible it didn't go well with other drugs in his system for his cancer----i.e.------>pain meds, chemo drugs, anti nausea drugs.

I think my brother had mild POTS, he had several trips to the ER through the years for tachycardia----but his heart always checked out fine.

My brother ended up on marinol which is from marajuana---but pill form. He took it for nausea.

If they would legalize it---(at least for medical use), I think it could help the economy A LOT.

Right now I don't have significant nausea, so I don't need treatment---but if I did, I would consider it if I didn't cause tachycardia for me. It's good to know there's doctors who have knowledge about different types.

Maxine :0)

My hearing test was perfect----------in fact the woman who did the testing said my hearing was REALLY, REALLY GOOD, and the best she has seen on a 50 year old.

I think my BAER test was normal too. I don't know about the CT scan of the temporal bone they did today yet.

The bad news is that this doesn't explain where the mastoid fluid is coming from, so could be related to my cervical/cranial problems----or a vascular issue in my brain----especially since I have lesions in the deep white matter, and so far no real explanation.

The ENT I saw is an MD, and also a PHd. He thinks this mastoid fluid is really weird too, and wonders if it's something else. It's showed up in three different films. An MRI in 2005, A high resolution CT scan this year, and now the MRI I had done a couple weeks ago. They'll probably compare the other films with the one they did today, and then take it from there. I hope they don't drop the ball on this, I want to know where this fluid buildup is coming from.

It's possible this could affect my hearing from the inside out-------------- I'd hate to have my perfect hearing wrecked because of cranial instability an cranail vascular issues that docs won't dig deeper on. My ENT seems to understand, and thinks the docs need to look further into it. I'll see what he has to say on my next appt. next week Wednesday.

Crazy stuff.

Maxine :0)

Yay! It makes all the difference when the staff is NICE, especially if the doc is too-------BONUS!

It looks like they want to stay on track with you and follow up with you and actually find some answers and possibly bring you to a more functional state.

You have to keep trying, and even if you feel no one will ever help, something eventually comes around the corner.

It would be really cool if they did write a journal with you as the subject.

Maxine :0)

Janey,

I'll say a little prayer this passes for your quickly. It sounds pretty rough, and I know how this affects our POTS---it's not good.

HUGS,

Maxine :0)

Thanks!

I used to be diagnosed with mitral valve prolapse, but the standards for diagnosing that have changed since 1982 when I was diagnosed.

As far as I know my heart should be OK as far as structure, and I presume my arteries are A-OK also, because when the cardiac calcium scoring Ct scan was done my score was -0-, which means 90% of the woman my age have more plaque in their arteries. I don't know about soft plaque because they couldn't get the heart rate down to 60 bpm for a sustained period to get pictures for that. I didn't want to be given more beta blockers risking an arrhythmia that could end up permanent.

My PCP said A-OK on the ECHO. he sends copies of all tests to me.

Knock on wood.......he's a good guy. You know how that can change---lol.

Maxine :0)

I just thought I would give some good news--------------

My ejection fraction is 55% which is in the normal range. Mild regurgitation on mitral and tricuspid valves.

Here's a link from the Cleveland Clinic on normal Ejection Fraction levels.

http://my.clevelandclinic.org/heart/disord...onfraction.aspx

Maxine :0)

Thanks for the replies---

I think everything is natural in it. Sugar doesn't bother me at all-----UNLESS maybe I had an excessive amount. I've gone to "teas"--(I guess that's what you call them), anyway, there's lots of desserts and most of us taste everything. This is only an occasional thing, but I've not noticed sugar bothering me other then when I first got sick and my body was on hyperdrive. Everything bothered me then.

My body is so sensitive, but sugar isn't one of the things that bothers me. However, all the fake sugars always give me a mild reaction-----a little more so with splenda....... I think that stuff is poison.

I would love to know the big mystery behind this reaction. I've had reactions to D-3 before, but this one was really bizzarre, and I'm thankful it was short lived.

ajw4055, that's interesting about the D-3 being derived lanolin (sheep).

Maxine :0)

I'm sorry you had to experience such disrespect from that doctor! One would think this wouldn't be a shock, but somehow it still surprises me how doctors can be so cold and have such terrible bedside manner. If this doctor is going to see POTS patients he needs to have a better understanding on how to treat his patients. Even being involved in research doesn't mean he can be this rude and disrespectful----even if his time is limited. When I saw Dr. Nazli McDonnell who is a geneticist involved in heavy research on EDS at NIH, she gave her patients time AND respect.

On the other hand I'm happy that you stood up for yourself and talked with a patient representative who took your concerns seriously and set you up with another neurologist.

It looks like your POTS and gastro issues may have better management anyway---

I'm glad your experience overall had a better outcome.

Maxine :0)

Thanks---

I DO seem to have a reaction to vitamin D for some reason.

It's hard to tell if it would be Costco, as my OI is usually delayed and sudden----this time it was quick. My reaction under OI stress is different also. It's more like a switch just shuts off and I MUST sit or lay down. This was more of a creepy kind of rush with added dizziness, and my breathing was affected along with weird heart sensations---------it almost felt like a backfire, but the sensation was also in my abdomen. NO chest pain though-----at least I don't think so. Who knows, I have so much pain in my thoracic back also, and it spreads to the chest area------------it really works the nerves.------

I'm so sick with the swelling in my lower right side of my neck, and the rest of my enck and lower cranial pain I don't know weather I'm coming or going. I didn't need this rotton spell on top of everything.

Maxine :0)

We were at costco, and their demos were out showing all the fun foods vitamins ect.

MY husband said there was some vitamin some liquid D3, and the lady suggested I try it. at first I was reluctant, but then tought how bad could vitamin D be?

I had reactions to it before, but it was body aches/flu feeling. We had our 5 year old granddaughter Kaela with us, and at first I felt light headed, then I wanted to get out of there. We took her home, and my son came out to greet us with little Mackenzie. I told him we had to go. On the way, while we were on his street I felt some terrible heat rushes though my chest and abdomen-------kind of like taking a large swig of strong whiskey. Then if felt like my heart was trying to beat against the wind, or it was irregular----something weird----then fast, but when I felt my pulse it only seemd a little fast, maybe high 90s. My guts are upset do, and it made me run to the bathroom. It felt like I couldn't breathe, then I started to breathe in and out in a regular rythm and it seemed to help.

This couldn't be from vitamin D3 could it. All the rest of the ingredients were natural.

I'm so low on vitamin D, and even though my bone density scan came out OK----(just some osteopenia in hips, and a little in my wrists), I know I'll have to find a way to get my levels up since I'm only at a level of 3. My body doesn't like the sun either. I went out in the sun yesterday because it was in the 50s outside, so I could tolerate it better. If every day was like thaat I could get enough sun.

http://www.target.com/Wellesse-Vitamin-D3-...y/dp/B001JSDEJQ

I saw the previous post on vitamin D3, and it seems a lot of us are low on it. However, I don't think it causes POTS. I think our POTS is something else not related to this. The important reason for having normal levels of D3 is for bone health, and possibly preventing some forms of cancer.

It seems my body doesn't like it one bit, and I would love to know why.

Anyone know how long it takes to metabolize this stuff out of my body? I know it sounds weird because I need this In my body----and I don't understand why I have this reaction----unless it's ome kind of autoimmune thing.

Ever here of this stuff?

Maxine :0)

Oh----I didn't even pay attention that the link was from June 2008. I still thought his answers were very interesting, and informative.

Maxine :0)

Pretty cool!----------------

I'm so sorry, Little Sophie and the rest of you will be in my thoughts and prayers.

Maxine :0)

My son with his stepdaughter Kaela on the left, and their new daughter on the right almost two years ago.

This is them now;

Sending health thoughts and prayers. I know getting sick on top of having dysautonomia is rough. Last year was abad year for that, hoping this year is better.

Your a good mom-------your on top of things, and I'm sure your son will be fine because of that.

HUGS,

Maxine :0)

marni4u

Yes, things will definately look up for you. Things have a way of coming back around for people like that. My exhusband left me for another woman---(yes, she was a co-worker), they got married before the ink was dry on our divorce papers.

Seven years later I got a seven page letter apologizing for his HUGE mistake, and for all the things he didn't see in our marriage. He wanted me back..... She ended up leaving HIM for another man, and now he sits alone, unemployed, and diabetic from his huge icecream addiction, excessive drinking habit---(which he didn't do when we were married-----but unfortunately preferred smoking POT---lol)----in excess I might add.

I ended up marrying a man 5 years younger then me two years after our divorce. I've been married to Ron for 20 years. During those 2 years I went back to work, worked my way up in two companies, and worked in the latter for 10 years-----And went back to school. It's turns out the divorce was the best thing to ever happen to me. I wasn't very happy anyway. The one good thing that came out of that marriage was a beautiful son who is now 28 years old. Now I have a one beautiful step granddaughter, and he and his wife had my other beautiful granddaughter.

Go look in the mirror and look how beautiful you are----inside and out. You have a new world ahead. Some days will be lonely and even scary---BUT you can make it. Take it slow, and your pace even to keep your health in check. Don't let anyone try to mess with your spirit----this is yours, and never let anyone try to break it.

I know it must have felt like a hot knife in an already open wound, and I'm not going to lie, I probably would have made a scene . You did the right thing by getting out of there.

Do you have a close friend you can get support from, or another family member? I'm sorry your parents had to leave, but hopefully you can see eachother often.

I'm praying that your spirits will be lifted, and your future bright and happy.

HUGS,

Maxine :0)

Well at first I felt a little cynical due to the same old answers some ANS specialists give. BUT, this doc has it together! He's sharp as a tack! He's both a doctor and a person with COMMON SENSE.

I'm impressed with his knowledge, and he seems to be up to date on the latest treatments. I was also impressed that he knew about EDS, and the fact he said checking the aorta is very important.

Another thing that was great was the fact that he looks for underlying causes of ANS dysfunction------other then just look at the records and assume the person has a certain type of dysautonomia and start treating them without knowing the specific underlying cause. A tilt table test only shows if the person has syncope and increased heart rate or drops in blood pressure------------BUT doesn't show what else might be causing these things. POTS can be secondary to other diseases or medical conditions.

Right now a neurologist at the Cleveland Clinic is currently working with me to find out why "mastoiditis" continuously shows up on MRIs and two CT scans now. I saw an ENT, and he thinks there's more to it then a chronic mastoid infection. First, white count is normal, and it would have to be high if an infection is present. Second when he looked in my ears there's no sign of infection, past or present. Now I'll be doing a BAER test, another CT specifically looking at this area, and a hearing test. This is in addition to ultrasounds of carotid and VERTEBRAL arteries, and abdominal aorta. I also had a cardiac echo.

Maxine :0)

Periods ran 2-3 days, only 12 hours of it being moderate to heavy, and it stayed this way from age 12 until my last period a couple months ago. I'm 50 years old and have no idea if I'm in menopause, but I assume so because my periods have stopped then started again----sometimes gaining back my normal cycle. My symptoms of menopause seem mild, and hot flashes just seem annoying more then anything.

I don't think my cycles made my POTs worse, but it did increase my cervical/cranial pain, and caused more headaches. I notice some mood swings and having less patience, but maybe it's all the health issues and being tired of doctors---

Maxine :0)

Sending you a BIG HUG. I'm sorry you can't seem to get your PCP to understand how awful this is for you, and to realize you need to be taken seriously.

I can relate to all kinds of weird feelings, and sometimes I just try to deal with some of it on my own because I'm used to some of the weird sensations I get, but there's other itmes I want my doctor to understand that something isn't right and it needs to be further investigated.

My klonopin---(generic-clonazapam) has been a big help in settling down the excess adrenaline surge I get when stress goes over the top.

Maxine :0)

Sending you a BIG HUG. I'm sorry you can't seem to get your PCP to understand how awful this is for you, and to realize you need to be taken seriously.

I can relate to all kinds of weird feelings, and sometimes I just try to deal with some of it on my own because I'm used to some of the weird sensations I get, but there's other itmes I want my doctor to understand that something isn't right and it needs to be further investigated.

My klonopin---(generic-clonazapam) has been a big help in settling down the excess adrenaline surge I get when stress goes over the top.

Maxine :0)

I thouhg you might find this link on BAER testing interesting.

It looks like it's important that this test be read by a ENT--neuro with a PHd in addition to an MD.

The ENT I saw has both.

http://www.dizziness-and-balance.com/testing/baer.htm

THANKS AGAIN! I really appreciate you following my posts, and all of your support!

Maxine :0)

HUGS

So sorry to hear your dealing with a virus on top of your other health problems.

I would see the doc, and also request a chest x-ray if you suspect lung involvement, or feel congestion/tightness.

You can't really take any chances with this flu season.

Maxine :0)

Thanks for your replies, and for your support!

This is all so confusing, but what is really making me wonder is the fluid and abnormalities in the mastoid area. The leasions have been there, and it sound like I'm getting more. I have this instability right in the cervical/cranail junction, and what appears to be this missing left vertebral artery. This needs more followup!

I talked to my Doc's secretary this morning when I called to renw my prescription. I told her I received the test results from him, but I actually had copies mailed to me at my request by the radiologist. I studied the results before I got their copies, and I told her that I don't understand how this radiologist could possibly know what he's doing when he missed many of the abnormalities that mostly every other radiologist from different hospital facilities picked up on.

Vascular congestion seems to be something that should definately be checked out. I'm thinking this would be further up into my brain, and the vascular carotid and apparently vertebral flow was fine, but again, I don't have the report from the doctors who will read it.

On Tuesday next week I be having a BAER test, CT of temporal area in my brain, and a hearing test. This was ordered my my ENT, and he didn't see any evidence of a middle ear infection on clinical exam, but wanted to order these tests because of the matoid fluid buildup that has been there for over four years.

Maxine :0)

Today I went to get ultrasounds of my carotid, VERTEBRAL, abdominal aorta, and a cardiac echo.

Here's a twist! Remember when I said my left vertebral artery is missing, and it was confirmed by NIH, and finally by my local neurologist because they finally LOOKED at the MRA done in 2005. Two MRAs showed this artery is missing, the one in 2005, and the one done at NIH done in 2008. I also saw it on my computer----there it was plain as day two larger carotid, and only one vertebral on the right-------------nothing on the left---JUST GONE.

Well today blood flow shows up where the left vertebral artery is, and so does the artery on the ultrasound. Explain this! This is all too weird. Now this is all we know so far, the doctor has not seen the ultrasound films yet. This was just what the ultrasound tech. and I saw. She double checked, and there it was. Was the artery damaged beyond my neck? It could not be visualized on the brain MRAs. I told her about the swelling in my neck near my clavicle, and she said she noticed it too, and I told her it gets worse the longer I'm standing or sitting, but worse when standing or using my arms to do anything. she checked this area also, but didn't see any growths or blockage.

OK this was today. Friday I saw an ENT. This is because mastoid fluid has now showed up on 2 MRIs, and one CT. One MRI in 2005, the recent CT I had done this summer, and the MRI I just had Wednesday last week. I told you my granddaughter hit me on the face with a heavy toy, and since then I have had worsening of already existing symptoms, and pain. this is why PCP ordered the MRI. NOW GET THIS! I have stated that many of my MRIs show abnomalities---especially in cervical spine. Everywhere from NIH, to NY, to four local hospitals------------usually all reporting the same herniated disks, some reporting the congenital cervical spine stenosis, and two reporting abnormality on odontoid bone with pannus growth. My PCP sent me to a local out patient radiolgy clinic. What a joke--------the MRI on cervical spine showed "normal cervical spine". This is crazy, as soon as I got home from taking the MRI I had to get the weight of my head off my neck and lay down it hurt so bad, along with a wicked headache with different positions. This headache is still here, and it feels like I have edema in the right side of my neck.

OK, the brain MRI shows scattered foci of signal abnormality in th deep white matter of cetrum semiovale and frontal regions. These changes could be from vasculitis, small vessel ischemic change, or demyelinating change. A mucosal signal abnormality suggestive of a small retention cyst on right maxillary sinus, then of course abnormality in the right mastoid air cells suggestive of, "childhood infection", or "chronic mastoiditis". HMMMmmmmm, the ENT did not see anything wron in my middle ear suggestive of infection----EVER. As a child I did not have chronic middle ear infections. BUT, I do know vascular congestion can cause this------but dare I bring this up to any of my physicians-----------------I think not.

Something isn't right-----but I think they're waiting for my head to blow up and they'll examine the aftermath to see what caused my head to blow. When is the rocket scientist going to come and figure out that it's probably related to cervical/cranial instability combined with vascular issues in the back of my brain?? Along with the headaches I get from different positions of of my neck and head, but I also have the constant localized pain right where I felt the tear somewhere between my upper neck and head. The ding dongs at the radiology "outlet" couldn't find anything abnormal in my c-spine----but yet everyone else has---and this is before the toy in the face mishap last weekend. Meanwhile, still the same old symptoms with a little more dizziness thrown in.

I'm sitting here after taking over an hour to type this wondering when in the heck the rocket scientist is going to come and save the day for me........

Forgive errors---I'm not correcting tonight.........

Maxine :0)