Maxine

Thank you for the update Michelle! I hope you continue to improve Melissa-----you are in my thoughts and prayers. Also praying for you to have a nice peaceful, happy, and healthier holiday and new year! Hang in there Dear............................BIG HUG to you. Maxine :0)-------------------------------------------------------------------

First---I'm really disgusted that this guy would think a size 3 is too think----- It might even be to thin----depending on how tall you are. If your 5ft--0 then it's OK. I have always been pretty thin most of my life until I hit 40, then I went up to a size 10 @ 5ft. 4in. Still a decent size, but I felt fat because of what today's society has put in our minds. Now we have woman destroying their health to be "thin" or at least what society deems thin. When I crashed really hard with POTS after I turned 41 I lost a lot of weight, and shot down to a size 6. With my bone structure I was too thin. I also had muscle wasting---it was pretty scary. Here's the sick part----although the Docs didn't really know what was wrong with me---they showed concern because of my low weight which was-----(123 pounds). Well after seeing Dr. Grubb and being officially diagnosed with POTS I was put on drugs to stabilize my POTS. I gained all my weight back---plus another 20 pounds. Now there is a nurse practioner who classifies me as "OBESE" at a size 12. When I gained my weight, I also got a thicker neck which makes me look bigger then I am. I became self conscience of my neck, and still am. Of course some docs show less concern based on my weight----but in reality I have been much sicker due to the other complications from EDS, and severe upper spine/cranial instability. Now I have lost 15 pounds, but I could care less if I get down to a size 6 again. And I will certainly never do this for my husband--and he knows that if her ever called me "too thick" he would be locked out of the house. Any man that would base his feelings for you on your size-----"especially thinking a size 3 is "too thick" is not mentally well. I would run as fast as you can away from this guy-----------and then grab a nice piece of chocolate and celebrate. The main thing to do is eat right---lot of vegetables, fruits, protein----and try to keep refined carbs to a minimum. And remember if you can't find your behind---your too thin. I actually had a cardologist who was happy I gained some weight. I was only 110 pounds when I first went to see him years ago (80s)---and he diagnosed MVP-- he thought I was too thin. There are woman out there who will throw up their food to look good for their partner----or to feel acceptable in society--------that's just really sad. Maxine :0)

Cardiactec, I thinks it's crazy they won't do an EP study on you. That could at least rule out another cause. I can't imagine how frustrated you are. I am also one of those who started out with tachycardia only---and a few bouts of CFS---then the big crash. When I crashed we had trouble controlling the Tachycardia on my normal dose of beta blockers, but then they seemed to worked after a few months from the crash. I will still get break through Tachycardia from time to time----and I hate it. It scare the you know what out of me. It looks like quite a few people have this, and I think it warrents futher investigation. They shouldn't just blame the POTS until they check other possible causes. I'm sorry you can't get the Doctor to cooperate with you. Hang in there---and don't give up finding the right help. Maxine :0)---------------------------

Morgan, Yes I had a scheduled colonoscopy---but a virtual one-----by high speed CT scan without the scope, but since 99% of my family has polyups the surgeon and I made an appointment to discuss the regular colonoscopy. We have not schueuled it yet, but Dr. Grubb's office has been called to discuss it. She wants to admt me to the hospial for the prep---mainly because the prep won't allow my medications to be absorbed----which in turn would make me unstable for he test. I was fortunate enough for her to see a low BP reading when I had my first appointment with her----it was 80 something/50 something. and that was sitting. From then on she was pretty serious about the whole thing, and that is why she wanted to avoid sedation at first by doing the virtual colonoscopy. Dr. Cashen is the surgeon who found the Cancer in my brother's colon, and the surgeon who did the removal of the tumor, and the bowel resection. She is one of the nicest doctors i have ever met. After we talked about it again----we decided to just get it done. I need to follow up to make sure they got in touch with Dr. Grubb. If not, I think we will just schedule it. My Cardiac CT scan is finally scheduled for the 14th. Theresa from Dr. Grubb's office coordinated it----she was pretty cool about it considering I was persistant. I just needed to get it scheduled before the end of the year for the insurance deductible. Usually my BP is higher then usual when I go to the doctor-----so unfortunately they don't get to see my usual low readings----which makes me wonder if they believe me sometimes. Thanks again for your support I'm doing a little better, but have a really bad headache, and of course still have the ice pick feeling up and down from my neck to my mid back. This morning I had trouble keeping my balance. I have a partially blocked cerebral spinal fluid flow-----so i'm guessing this is what is causing my recent headache. Maxine :0)

Thank you for all your support and words of encouragement. It means a lot to me---- When I get the CT scan and colonoscopy out of the way-------at least some of the anxiety will be taken care of. It's the worst when your spine is buzzing like crazy, and your hands are numb----just plain scary-- Maxine :0)

Tonight I have been so sick. I had my son and his girlfriend, and her daughter Kaela over tonight---well it was last night now. Anyway, I made lasagna and a nice salad. Meanwhile my husband is trying real hard to cheer me up by putting up christmas lights outside. He knows I've been really depressed and wants to help me feel better. Considering all the pain and fatigue I was doing pretty well until I did something to my mid back. I was taking Kaela--(my son's girlfriends daughter) to day care. This doesn't happen often, but occasionally when Carlie's mom is out of town---they ask me to pitch in. Kaela dropped her sippy cup and I worried she would have a melt down, so I quickly twisted around and picked it up from the floor of the back seat. When I twisted back around I realized this was an impulsive move that I should have never done. Having EDS I am very flexable----twisting was not a problem, but the consequences are. Something went wrong, and the pain in my mid back is actually making me sick to my stomach. My husband feels something sticking out of my mid spine about the size of a pencil eraser---and it hurts to be touched--evn lightly touched. I have been waking up in the middle of the night---or very early morning feeling nauseous----not my norm. Now I notice I need to find a more comfortable postition with my new lap top----looking down and holding my head back is bad too----worse then tilting my head back. I can only look straight ahead when posting, or lean my head on a pillow and prop the lap top up to keep me from moving my neck in a bad position. I have realized my neck is becoming more of a train wreck. I'm concerned with the lesions found in my brain, and the one the neurologist recently found in my medulla/brainstem. She also mentioned it could just be the partially blocked cerebral spinal fluid flow. I say this because the blocked CSF flow would be better then having a lesion in that area. The blocked flow is expected with a small posterir fossa/chiari-0--aka-stenosis of the brain stem, and upper cervical spine. However, I don't want surgery, but my symptoms have gotten so bad that the Docs here in Toledo can't help me. I'm in constant depression, and still see my psychologist, but couldn't make it to my last appt----as I had to go to a funeral for my husband's Aunt. I'm becoming less and less functional. Before I could at least get out a little---------now I'm strggling to go out and walk around a store for more then 10-20 minutes. There were days I could manage to go shopping in short spurts on good days. Friday I went with a friend to Kohls, and was doing pretty good for a while, then I started getting weak, and those sudden feelings of the floor moving . I maintained my composure until we left the store, but I was sure I was going to collapse before I got to the car. You know those black carts they have at Kohl's----Well I had to take mine back---it was cold out---and I truly felt I couldn't make the 25 foot jaunt to the store to return the cart. I wanted to beg someone to take it back for me. My head is too heavy to hold up. I'm constantly having a buzzing in my spine, and I get over stimulated so easy----I get very jumpy. I have started snapping at my husband because I'm so miserable I can barely be touched at times. Just feel like my spine is electric---------I'm sick of the vibrating. Numbness is getting worse, especially in hands and feet. The pain is to difficult to describe, more or less like a furniture clamp getting tighter and tighter from my lower head/neck, all the way to my mid back---mid back being pretty severe also. My husband and I ventured out to a local large general store---(very cool place that has everything from lawn and garden to fine wines, imported foods/desserts/chocolate, deli/bakery--fresh produce----to building materials. It's called ("The Anderson's"). I tried to enjoy the trip out. We went to "Tony Paco's---made famous by Jamie Farr on Mash) they have one inside Anderson's. Ron got some roast beef---and shared it with me because I wasn't that hungry for more then a couple bites of something. Some nimrod slammed the garbage lit behind me, and I impulsively cursed out loud. I felt so bad for doing that, but I scare easily, and I jumped out of my skin. Some woman skurried off with her little girl. This is just not me----I feel like I'm losing it. My husband and I went back to Kohl's for a short trip to pay our bill, and pick up another hoodie for himself. I did a little better there, but my husband had to carry my purse-----that's how bad my back is---can't even carry my purse. The upper body weakness is incredable. Mostly pulling or pushing or holding any weight in my arms is pretty much impossible. I have been instructed to not pick up more then two pounds. A gallon of milk is too much. My little pomeranian is too much---9 pounds. But she's not dead weight, and she helps. Tonight I couldn't enjoy dinner---couldn't eat much---I was wiped out and in too much pain. Then after they left I was sick-----on the toilet----Which is a switch for me, as it's usually the other way around. I never knew a person could be so full of gas------------I felt like I swallowed a large balloon---I was belching like a beer drinking slob. I thought I was going to explode----and I had tremors---and of course more pain. As I type this my hands struggle from numbness. I still get the sensation that my breathing is restricted---especially when I look down or to the side. This is so long----but I just needed to get this out. I am so depressed. I know I have a lot to be thankful for, but right now life has been a huge struggle. If I sit quietly on the couch and do nothing----I might have a fairly decent day. The more I do, the more screwed up I get. When it gets bad I lose my balance and had such pain and fatigue it's an effort to breathe. Tonight I made lasagna---gee I should have known that I shouldn't have company------I'll pay the consequences for trying to live a little. Sorry this was so long---just feeling a little sorry for myself. Maxine----------------feeling lost...

Melissa, I'm thinking of you----wishing you a very speedy recovery. Sending you some get well flowers. Maxine :0)

Nina, My psychologist keeps telling me to listen to my body------(the subtle signs)---before they turn into the (i'm crashing signs). It's especially hard to do when your doing something you enjoy, as it's hard enough to get enjoyment as it is, so when the chance comes we take it. I think your doing all the right things now----I wish you didn't have the all day conference tomorrow, but maybe you'll get the edge off this before the conference, and when you get home, back to resting and healing. I hope the tubes make some kind of difference---maybe this won't last as long as it did before. Time to slow down.--------------- I hope you feel better soon.... Maxine :0)

I'm not a fainter, but there are times I feel so horrible---------- I feel I might collapse. I usually look just fine---there is no look I have that makes me look ill. There is only one time I think someone thought I may be in trouble. I was at MUO (where Dr. Grubb works) hospital. I had gone to the library to help a friend find some ANS research. I got terrible brain fog and crashed pretty severely. I got so weak I got lost on my way to the parking lot----I was on the verge of collapse---and the woman walking towards could see I was in trouble. I gave her a faint smile---and she walked by with a rather concerned look. I know my face must have looked funny---or very pale, as this lady looked like she was sure I was going to pass out. It was about 90 degrees that day. I get sick of people not understanding how bad I feel---I just get disgusted. Maxine

Too cute Nina---------- He looks like a happy boy. Some day I'll have to get my kitty pictures ready----Spencer is 18 pounds! Samantha is only 4 pounds. Maxine :0)

Happy Birthday Nina ---sorry so late, but I have not been able to post. Thanks for helping me get back on the forum Nina! It looks like there was something wrong on my end and I wasn't receiving e-mails from Dinet---- Maxine :0)

I'm right handed, but I drive left handed----lol----that's about the only thing I do left handed---it just feels right that way-he he he----------------------------- Maxine--------------------

I bet it's from your BP getting low in your sleep. I can't imagine having anxiety in your sleep---it has to be your POTS, but it can't hurt to check out all avenues. That has happened to me before, but it was more in the beginning, just before I was diagnosed---and it was never explained how I could wake up that way. I hope this passes for you soon. Take care, Maxine

Jan, I'm so happy to see you back! I'm so sorry for your loss, but glad Jeff is resting peacefully now. I know how hard you both fought this-----Not only was he brave----but you are too! You know my heart is with you dear. Jeff's spirt will live on in many people's lives---he had a true spirit that shined brightly along with his kind heart. Please concentrate on keeping yourself well--take your time recovering----and open yourself to healing energies. Your a strong person Jan-------------I really saw this as you went though this journey. Thank you for sending us the link---That smile of his is contagious-------------------- HUGS to you --- Maxine

Hey Willows, Nice to be back ---and actually reply to your poatings------- This digestive junk is for the birds-------nothing worse then feeling like you've swallowed a bowling ball. I know it stinks to have some of those wonderful yummy treats limited in your diet, but you will find that things will pass better. My Dad has glutin sensitivity---and actually has problems producing yeast--(you don't want to know from where). He has only noticed this in the last few years. He was bad about the time I crashed with POTS in early 2001---and now it's back. He needs to eliminate glutin products to get rid of the yeast problem. Any tips on diets free from glutin would be very helpful if anyone has some tips for my Dad----I will pass them along to him--------------- I know I must have some sensitivity also----but I just don't want to know..... NOT YET.....Doing pretty well on watching refined carbs----or other heavy carbs. Pretty good for a girl that could live on potatos, rice and any type of wheat breads---or rye breads. And let's not forget chocolate. I think we can all benefit from a little bit of chocolate---just a small piece-it's good for the spirit. But I'm lucky---I can be satisfied with a small piece of chocolate. I hope you get rid of the misery soon----and get that eye of yours in shape....... I love reading your posts----you have a great attitude, and you manage to keeo your sense of humor----I love people who like to laugh at this sometimes---or just laugh in general. It helps keep us sane.... HUGS to you--- Maxine

Hey Dizz, I'm sorry you have to deal with yet another problem on top of your existing nightmare. Colds really mess with our POTS---not to mention an all out respiratory infection! DRINK< DRINK< DRINK-------> the more you drink, the more you can flush this stuff out of you. I hope you feel better soon dearie------------------------------------- BIG HUGS to you------------------ Maxine--:0)

Thanks for the replies girls! I'm up a little early, but I will definately be going back to sleep. I had a bad dream, and it woke me up at 5:12am. I got up and took my BP and HR because it felt like my heart was racing-----my HR was only 64 bpm, and my BP was 112 over 69-------pretty normal--- When I took it standing it was OK----so I'm not sure what is going on. However, when I sat back down it still felt like my heart was racing--------I figured it out----my spine was buzzing again. I get this vibrating/buzzing sensation quite a bit lately, and I'm starting to feel it in my hands. POTS wise I'm not doing that bad----all my symtoms get worse with activity or when I have to go out and sit up for an extended period ----like when going to a wedding---visiting someone ect.---basically going somewhere where I can't lean back and take the weight of my head off my spine. Yesterday I went shopping at Kohl's with a friend who also has POTS. As you can imagine---time was limited for us---LOL. For some reason I do better in Kohl's-----the lighting is not as bright, so I last a little longer. Ahhh----a little enjoyment shopping----something rare for us---- She had to keep moving to prevent blood pooling in her legs and feeling near syncope----I need to do the same thing, but if I move too fast then my spine stuff gets bad. When this happens I crash----and quickly. It worked out, but barely. As soon as I hit the cold air when leaving the store---my body couldn't handle it----I was crashing. I'm discovering that my problems with ANS dysfunction are probably related to the EDS and spine issues----and the EDS specialist thought there was a relation also. Did you ever go out and feel somewhat OK---and wonder how you keep going---then you sit and crash really bad after you sit? Also, I always thought---"I'm not one of the POTS people who has blood pooling". Wrong! I decided to start looking at my legs in the shower-----PURPLE THEY ARE--- I never wear shorts, and just assumed I didn't have pooling. Dr. Grubb also thought I may have abdominal pooling as well. I guess that is what the EDS specialist meant when he said I have EDS with vascular involvement----and skin fragility. The good news is that I lost about 15 pounds---probably from slowly cutting refined carbs in addition to less of an appetite in the evening. In the evening I get a little queasy---especially if I over do it, and have a lot of pain. I hope to get these other tests that aren't related to my ANS/EDS/chiari/spine related issues over with in the next couple of months----then this will clear a large load of anxiety away. Emily----would you believe with my love of the pink panther I only one have small pink panther figurine that is a little rubber one that bends like gumby?----you know, with the little wires inside them that makes them bend. My son gave it too me. Thanks for your replies and support. Your all great people! Maxine :0)

Hi everyone, I have had quite a time logging in. First I forgot my password, and when I got my new lap top computer I tried to get a new one. Nina tried to help me, but for some reason my computer was not receiving e-mails, or so I thought---as my other computer wasn't either. The only thing I can think is that when I changed my new user name and password a while ago----I think I also blocked e-mails from the forum. I was really paranoid after a nurse stalked me on this forum-----so I may have blocked e-mails, but I can't remember. Nina mentioned that it may be my computer---then I started to remember. I e-mailed Michelle too---and she forwarded my e-mails to Nina. I feel bad, because I mentioned that maybe I'm not welcome here anymore----and the whole time they were trying to help----------------Thanks so much for your patience Nina----and for dealing with my paranoid ramblings. A lot has been going on---and I think you all know that I went to Cincinnati Childrens Hospital to see a Geneticist/EDS specialist, and their cardiologist. They gave me the "official" EDS diagnosis. I was also diagnosed previously by the chiari institute, and the Cleveland Clinic, but I wanted to see a specialist in EDS. Anyway---the geneticist was mostly concerned with my upper cervical spine, and cranial instability---as the EDS will aggrivate this further---so he recommended no physical activity other then using a kick board in a pool----no upper body usage at all, other then using 2 pound weights to help with toning. Keeping things toned with EDS is very important----but I have a catch 22 due to an unusually supple spine/instability. Then I had my Dr. Grubb appointment----he was very kind, and understood the severity of my spine issues, and how it impacts my POTS. But what we focused on was getting something done to rule out coronary artery disease because of the long standing low HDL cholesterol----and the fact that I have so much upper back pain that radiates to my chest---and of course my arm numbness----I wouldn't know if my pain would be related to CAD. So we went with the newer 64 slice CT scan to scan my heart and arteries. Well I went to a local----large cardiac facility that has this type of CT scan. They had to stop the test because I couldn't get my heart rate down to 60----even on double the beta blockers, and more IV BB. I even took double the dose of klonopin in case it was anxiety. They wanted to add more BB, but I told them It was starting to affect my breathing----so NO MORE TEST. My heart rate hovered in the 90s, and they need to HR to be around 60 bpm to get a decent picture. Anyway, the nurses did sort of hover around me looking at their watches, and I could hear heart my HR on the monitor----the nurses were pacing---the brights lights----uggg, just too much stimulation. I called the Universtiy of Michigan, as they have the 64 slice CT scan too. They have had this scan for a while now, and have added more, and they have experts who are very familiar with cardiac scanning, and they said they are very detailed in getting patient history ect. They are familiar with the many complications from other illness they may interfere with this CT scan----and more importantly they are familiar with POTS and other forms of ANS dysfunction---- They will call me next week, and they will get me in by the following week. Also, I think I may have a local neurologist who may understand the complications from having POTS, chiari related conditions/spinal instability, and the EDS----how they all can affect the other. She looked at my last brain MRI because I had some lesions in the periventricular area, and she said she saw one on the medulla/brain stem----but wasn't positive---and it may be a Syringomyalia----( a fluid filled cyst of cavity) in the spinal cord, but this would be near the brain stem---(not a good place for this). Hopefully it's not a demyelination process (MS) going on, as this was mentioned in the radiology report. I see her again on the 18th. I have more numbness---especially feet, arms and hands/fingers. The pain has been intense at times, and I now have something in my mid spine that is really sore, and my husband thought something about the size of a pencel eraser was sticking out. So I guess it's kind of good that I'm getting some coordination of my medical care---but still have more to deal with---namely the colonoscopy. The surgeon and I decided to go with the conventional---as 99% of my family has polyups--(brother recently diagnosed with colon cancer)----so the virtual colonoscopy might be a waste of time. She thinks I should be admitted for the the prep because she said my meds won't absord during the prep, and that I will need IV administration of the meds, and also IV to prevent dehydration----I hope I can get a private room--- This is basically what has been going on.............I missed you all.....Glad to be back---- Maxine

Correction kids-------------it was not 51 episodes in one hour. I have the report now----The total was 51 in 3 hours of actual sleep, but the sleep was very fragmented----4 obstructive apneas, 47 hypopneas and apnea-hypopnea index elevated at 17.1 event's per hour, and 24 lying on back. Sleep architecture was notable for issues with moderate amount of sleep fragmentation appreciated. The good news is that I lost 12 pounds since last year according to the reports. Other bad news is that I lost an inch in height----not good, meaning that cranila settling may be a reality---or the person measuring my height is not correct. The Doc has me listed as "slightly overweight" by the numbers he sees, but not "OBESE" like a certain misinformed NP has listed on the clinical notes. Now moving from a size 12 to a 10 if I continue on this good path. I just think my appetite is not the same which helps--since avoiding sugar, my taste for it is not the same----A GOOD THING. I really didn't think I had apnea------------but everything from the lower neck up is not shaped correctly----so it's not surprise to me that he said my larnyx isn't shaped right---causing the apnea. It's funny how you don't relaize your waking up that many times a night. I assumed I woke up 2 to 3 times a night. they told me that I won't remember anything under a certain amount of time---I can't remember how much they told me though. Now all I have to work on is getting POTSPLACE on my new lap top. I don't remember my password---and I went to that web page and requested a new one, but never got a response---from the admin........ You all take care-------and sorry for not posting much lately----I'm not feeling that good---so a lot of my energy has been focused on family............ Maxine :0)

It can't be 51 episodes in an hour---could it? I'm so brain fogged---did I hear him worng? He said I had 51 episodes---but I'm not sure if he said an hour now----I'll have to wait until I get the report.....That can't be right........ He gave me so many numbers---then he compared it with other people who have moderate to severe sleep apnea---and said my numbers were worse---------- When I get my report in the mail---I'll send the details. For some reaosn ---i'm just mad as you know what today----I can't get anything to go right....... Maxine :0)

Dingy me---I need to switch this over to new lap top---------having trouble---can't remember password....

Hey Dizz-----I thought it was 51 episodes in a night also------------but it turned out to be in one hour..... This is why he said my situation severe apnea......I'll get the report in a couple of days Thanks for all the replies and support everyone! Holy Crap is right Dizz-------I'm having trouble holding my head up------------It just feels like my symptoms did such an excelleration this summer---------I just feel so limited........ Social life is the pits-----can't even go out to play cards---eucre-----I'd have to sit there too long. My husband an I went out to dinner last night, and I couldn't enjoy it. I felt miserable. Then his brother wanted us to come over to his in-laws. I didn't want to go---but thankfully they had a couch that was very comfortable---and I could lean my body back to take the weight of my head off my neck. We only stayed for about an hour... I'm depressed---and mad at the same time. Still trying to figure out why a medical professional put me in such a bad position putting me in a functional capacity exam that had physical tasks that could be dangerous for my condition. Apparently they didn't believe what I told them about my condition----nor did they believe what the NSG reports were saying. All this stuff was in my file when the FC testing was ordered. This was in July-----and now I pay the price in more ways then you could ever imagine. I'm still struggling to make sense of this...... Maxine :0)

Today I went to see my pulminologist after getting a phone call yesterday that my sleep study showed 51 respiratory events in 1 hour. He said I have severe sleep apnea. I have to go for another sleep study with a CPAP machine----------uggg---loads of fun there. Apparently the way my larynx is shaped is the cause. I have all sorts of bony abnormalities in my cervical spine/cranial area---so it doesn't surprise me that I have more structural problems. He said I can't continue on this way or I could have a stroke---or heart problems-----and he stressed this in light that I have other problems making it all the worse. ---After hearing this I wonder how I function ---period------------- Monday I'll be seeing a neurologist to see what those white lesions in the peri ventricular area of my brain are all about. It's good that I'm getting more answers, but bad because this is not going away.... Maxine :0)

Katherine, I just wanted to say I'm thinking about you----and don't feel guilty for taking time off. You need to listen to your body----and you just did the right thing by doing that. Hashemoto's is a funny thing too-----that can mess with your POTS. Have you had your numbers checked lately for that? Otherwise---just try to be kind to yourself, and don't worry to much. Sending a big hug...... Maxine----------(aka----Ju Ju-----by step grand daughter--- )

Thanks Emily------- Yes---I'll have to find the right set up. Right now (on my regular computer) I just look down on the key board---and try not to lean my head back. I need to raise the seat on the office chair to prevent neck strain---but then my feet are dangling and can't touch the ground. This makes me feel unsteady like I'm going to tip over if I lean back in the chair. I'm going to get one of those portable lunch trays, but no legs----and pile up a bunch pillows behing me and position the tray wehre I need it to prevent neck movement of strain. My dad has one---it's basically particle board that's curved to fit nicely on your lap. Maxine :0)