Maxine

Thanks for the link on the pillow Flop. Currently I sleep with my SOFT cervical spine collar because my cervical cranial area slips, and I wake up with a headache. With this pillow that you show in the link, it looks like my shoulders may do better too. I have slipping with my shoulders when I sleep on my side. It's really a struggle to sleep lately. Maxine :0)

Thanks, I found one too, but it's more subtle. It's hard to tell on me, but there doesn't appear to be any folds. I can see how this might relate to EDS. My ears are pierced, and the holes are all stretched out, especially the right one. My second holes are even too big. My ears have ben pierced for 38 years though. The old fashioned way with ICE and needle. The second ones were done with the gun. Maxine :0)

Anyone have a picture of what this looks like?

Big HUG to you. I'm so sorry to hear your husband feels this way. I'm struggling for the right words to say but I'm speechless. My heart aches for you thinking about it. I'm praying for strength and healing for you. Maxine

I can totally understand. I find this annoying, but I deal with it. I use dictionary.com to double check somehting I'm not sure of. It has no reflection on how smart you are. My dad graduated Magna Cum Laude with his Master's degree, but struggled with spelling. My mom always helped him with that. I can spell complicated words, but find that I mis-spell the easier ones. Maybe you can try dictionary.com also. However, there's those times you have the brain fog and think your spelling is just fine and find out later your not------------ I think people on this forum would understand and not judge someone because something is mis-spelled--------------- Maxine :0)

You have my full understanding and support! It's like walking through sand in the desert, or climbing a mountain. It does feel like a switch going off. On good days I try to take advantage of feeling SORT OF normal, then I'll be going along and get smoked----just like that! It happends so quickly, I you would think I would get used to it, but each time it takes me off guard. I also understand that feeling of being so weak and everything being drained out of you that you DO shake if you continue to push it. The only time I go rid of that feel for a length of time was after my cervical spine surgery, and steroids were used during and after surgery due to a kidney beaned shape in my spinal cord from the compression of herniated discs. I suppose they were worried about spinal cord injury or insult from the surgery. I was given high doses, and during the rest of the summer and early fall I had more energy, and I could even tolerate the heat better. the heat still go to me, but it took longer. Maxine :0)

Thanks Mkoven, I'm sorry your dealing with a simular situation. I like Dr. Heffez, and I think he's conservative. Maybe he can keep a close eye on your situation. Don't you live closer to his office in Milwaukee? It's a 6-7 hour drive from Toledo for us, maybe less depending on Chicago traffic. He's not one to push surgery. He understands I don't want surgery either. I want to avoid it, but with the enlarged vertebral artery I'm not sure it possible, because having this combined with the instability isn't good, as the enlarged vertebral artery is being kinked from the CCI. I already had surgery in 2002, and I remember the feeling when I woke up. I hated the effects of the anesthesia, so I really hate the thought of surgery. I didn't have any significant pain after surgery, and the morphine pump they gave me wasn't used. I either have a high tolerance, or anterior cervical spine surgery doesn't cause much pain. I know a fusion of c1-2 is done posteriorly, and there's much more pain involved from what I'm told. I don't tolerate narcotic pain meds well, so I'm not sure ehat I'll do. I sense I'll need surgery because I'm pulling muscles and ligaments in the left side of my neck, and getting terrible spasms deep in the tendons. The EDs is really doing a number on my neck, and I can't strengthen it due to the instability. It's hurting on the right side of my head now, and making my face feel mildly numb. Maxine :0)

Thank you for your support and replies-- Mkoven, I already talked with Dr. Mcdonnell, and emailed. She has not been able to find anyone who will take this instability stuff seriously. She is concerned also, but feels just as we do. Dr. Tinkle even talked to her at the EDNF conference. Dr. Tinkle recommended Dr. Durrani who is an orthopedic surgeon who has helped many people with c1-c2 instability. However, I have the enlarged vertebral artery and pannus growth on the odontoid bone. The enlarged artery needs to be followed by a neurosurgeon. It's startling how such a serious and obvious thing doesn't get the proper attention it needs from neurologists and neurosurgeons. If we can send men into space, and land on the moon--------WHAT IS THE HUGE SCIENCE IN INVENTING NEW TESTS THAT CAN SEE THIS INSTABILITY DURING MOVEMENT? What are they going to see on an MRI when a person is laying flat and the head locked in one position. Even on flexation and extension it's difficult to see. My orthopedic surgeon knows this, as he also knows the mechanics behind the instability, and how it's related to WEAK connective tissue. IT REALLY ISN'T ROCKET SCIENCE--------------------IT REALLY ISN'T. Even my PCP is taking it seriously which I didn't expect, but feel blessed he does. He is going through all this hoopla trying to get the virtual colonoscopy because I'm not stable. I'm just NOT. My headache hasn't gone away yet, and I usually can shake it. Well, on the 15th I'll have the EMG study at the Cleveland Clinic. I'm pushing them hard to understand this, and hopefully the squeaky weel will get the greese----------------or the listening ear-----------------something.............. Thank you so much for the compliments on my grandaughters. Kaela loves her new sister. They are half sisters------Kaela is 5, and starting kindergarten, and Mackenzie is 18 months old. Can you tell I'm a proud grandma. Here's Mackenzie trying my collar on; She was fascinated with it, and wanted to put it on-------------And Kaela did the same thing when she was that age. Maxine :0)

There's sharp shooting pain in the middle lower back part of my head. This has been going on for a while, and the rest of my neck and back are in a lot of pain. when the pain in me head gets really bad I start to slurr my speech, and get really weak. Anyway, I'm not sure what to do, as there's nothing locally as far as good medical care for this, and pretty close to ZIP on neurological following. Earlier tonight I got that old familiar feeling of adreanaline rushing into my chest. I'm really struggling, and not sure what to do. I can't seem to get into Dr. Grubb's office, but not sure what he can do for me anyway. I just need a good neurologist who understands the secondary issues to EDS and spine instability, and compression on the brain stem from instability combined with enlarged right vertebral artery. It hurts even more if I turn my head. along with this I have crackling in my left ear. Another thing bothering me is when I get relaxed, and almost fall asleep I get restless body, not just restless leg, but RESTLESS BODY! I rock, and rock until I doze off. Very weird. It feels like something is crawling on my back, and I have an electrical feeling. Struggling to hold my head up. Just complaining, and wish I could find a good neurologist. Made an appt. to see my psychologist this week because I need halep sorting all of this out. Still waiting for insurance to clear me to be admitted to hospital for virtual colonoscopy prep., and scared of what will be found because guts aren't working well either. Wish things were better, but feeling very fortunate to have my beautiful grandchildren visit us today. Maxine :0)

I have to go into a crouch when I get those weird flip flop heart beats. Blood pooling is what I'm thinking of, and maybe if you crouch too quickly, or stay there too long it might cause the blood to flow back up to the heart too quickly. The last time this happened to me when I was standing too long, and my heart flip flopped all over the place---(almost felt like it was being squeezed-----but no pain), I crouched and things went back to normal. However, once I crouched this particular time I had to go from full crouch to hands and knee position, as crouching seemed to help initially, but I was still feeling weird. I can't remember when I had the grey out----but it seemd like I was crouching. These things happen so quickly, and it's hard to be in the moment when you feel like your heart is going to stop-----or fall into your gut. I can relate, and this only happens to me every so often, but it scares the you know what out of me everytime. It messes with my mind. Maxine :0)

WOW, after reading the warnings from FDA from your link BellaMia I'm stunned. Can you imagine what this drug would do to an EDS patient!!!! My cervical/cranail area already feels like it's being held together by a bunch of old rubberbands. The rest of me isn't doing so hot either. Suzy, that list of ADRs on the link are truly shocking. Thanks Again! Maxine :0)

Thanks so much for the links Suzy and BellaMia. Very interesting, and I'm glad you were able to provide valuable information. I'm sure this will help her, and hopefully she can find something else that can help. Thanks for the tip on Zithromax BellaMia. hopefully this in an option for her. She still needs to address the bladder infection. This drug (cipro) sounds like a horrible choice, and I wonder why it's still available. Maxine :0)

Well, it depends Futurehope. If you suffer from arrhythmias and did fine on it it makes a difference, as this drug can cause heart arrhythmias. However, chances may be remote, and the arrhythmias could be secondary to an adverse reaction dropping the BP too quickly. It helps to ask about other experiences to help gauge a decision on weather or not to take a prescription, especially if it's possibly neuro toxic. I know a man who's dysautonomia got worse because one of the research hospitals used antibiotics as one of the trial drugs used in the study. He's doing better today as far as I know, but had severe OI for a while. Her doctor doesn't see enough ANS patients, if any, so he wouldn't know how well this drug is tolerated by people with ANS dysfunction. BellaMia, thanks so much for your reply. I'm sorry you went though that. My sister in law had a simular experience on it, but she doesn't have POTS, or any other type of ANS dysfunction. She had lasting effects for a while. I'm glad you were there for your mother-----------no telling what might have happened if your weren't. Maxine :0)

How many of you have been prescribed Ciprofloxacin----(cipro) for Bladder infections? My friend is very sensitive to drugs, and suffers from heart arrhythmias also, and can not afford any set backs at this time. http://en.wikipedia.org/wiki/Ciprofloxacin Also, how well have any of you tolerated ceftin, as this was an antibiotic I tolerated fairly well? I see it can be used for bladder infections also. However, it said if your allergic to penicillin to call the doc. She said she's allergic to penicillin. Any help is appreciated! Maxine :0)

One of the main reasons I chose Dr. Heffez was because he does have some knowledge of ANS issues. He's not an ANS doctor, and as Nina said he's a NSG. However, I wanted a NSG that took my ANS problems seriously, as this is very important when going into a surgical situation. Dr. Heffez is just aware of POTS and other forms of ANS dysfunction as it can be secondary to spine and brain stem compression, so he sees many patinets who have ANS issues. When I went for my initial visit I also saw a neurologist also, and he also had a good understanding of the ANS, but still not a specialist with it in any sense. When I had my surgery the nurses in ICU knew how to handle my ANS issues because they were informed in advance. Maxine :0)

I don't notice anything too bad, just some bloating of upper gut if I eat too much garlic. I rarely eat processed meat. However, now I'm in the mood for a hot dog now that you mention it-----lol. A hot dog with ketchup, mustard, and a small amount of vadalia onions sounds good. I'd like a chili dog, but that would really be pushing the envelope----lol. Toledo is home of Tony Paco's. I'm sure you have heard Jamie Farr from Mash mention "Toledo", and Tony Pacos several times. Once in a while I'll have half of a Tony Paco skinless Dog with katchup. They are more like a sausage----------------really good, but high in fat. I never thought about the garlic and onions being hihg in nitrates. I guess it's not a big deal for me. MSG is one thing I can't tolerate well at all, and I avoid it. http://www.advancedhealthplan.com/msgstudy.html http://www.resourcesforlife.com/docs/item1225 It's really not good for you at all. Maxine :0)

I love that EarthMother---- Sometimes I'm tempted.....

This is so true Tearose. Fortunately I have learned enough from the bad experiences, and know enough to avoid the bad docs. I have a few good docs, but still trying to find a good neurologist who understands the connection between spine instability and EDS. Dr. Grubb is right around the corner--(about a 1/2 mile away), and thankfully I don't have to worry about a Doc for ANS issues. It's difficult to get an appointment------------even living this close. My ANS symptoms are about the same, so I just deal with the waiting. I do see a neurologist who works in the same hospital as Dr. Grubb, but not for ANS issues. However, she doesn't seem dismissive about dysautonomia. She doesn't have a whole lot of knowledge about the effects of EDS on the spine and neurological system. She has a decent bedside manner, and doesn't seem to be full of herself. I don't really see her a whole lot, as there isn't much she can do because of her lack of knowledge on my specific condition. Neurologists seem to be the worst, and so full of thier own egos that they can't get in that place where passion for helping patients is at. Maxine :0)

There's days when I feel fairly normal, and those are the days I try to get a lot accomplished. However, when I crash it's so sudden and disappointing. It depends on what "normal" is for you. I don't really remember what it's like, so my "normal" could be different from the average person without chronic illness. I usually never have days without pain lately, but there's times when the pain level is lower, and I try to pace myself and it will hopefully stay that way. If I don't watch body mechanics, or do something stupid, then I end up in a pain crisis, and end up with terrible pain spikes in my spine, and insanely painful muscle spasms. Last night they were so bad they made me irritable. My pain tolerance is high, and pain in my hips, legs, wrists, hands, and feet is more tolerable and doesn't usually affect function too much. However, hip pain can get tiresome. Sunday my left hip partially dislocated, and I thought my leg was going to come off--- . With EDS I have lots of pain. Each day is a battle, but there are days when it's really hard and the emotional strain from it can be just as paralizing as the physical limitations and pain. The slow digestion issues can also affect my ability to function. Maxine :0)

I know all about POTTS, as a couple of docs put this in thier records, so I googled it. That wouldn't be fun to have-----sounds horrible.

It is kind of funny Jan------LOL. I've been to so many ERs. Now I fear them like I would fear being in the car with a 12 year old boy driving it, not knowing what the heck he's doing, and at any time we could crash into something. Docs have our lives in their hands, and it seems like some of them take it rather lightly. One example was when my mother was dying---(mind you this was two days before she died), and three different doctors came into the room and were clueless. They had such dumb looks on their face. The first one in her ICU room was a cardiologist, and he said, "hmmmmm, uh, well, it's not your heart". Then a nephrologist who said, "don't worry, once that nasty little tumor in your bladder is removed, your kidneys should start working again." After this the Urologist came into the room and said, "hmmmm, you lost over 50 pounds. Oh dear, that's a lot of weight." After this my Dad and I went to the cafeteria to grab something to eat, and when we got back the Urologist motioned for us to go into a small room with him. We went in, and he said, " I have very bad news, your wife and mother is full of cancer." Less then 48 hours later she passed away. She had about 3 hours of hospice care. After they gave her the first dose of adequate pain meds, she decided she wasn't going to take any more chances apparently, because she died right after that. The Urologist said he looked at her last CT scan and said her whole abdomen was infiltrated with cancer, and it also spread to her lungs. Too bad he looked at the CT scan 8 days after it was done, as they had this poor dying woman in rehab trying to build her strength for surgery to remove the "small tumor". They were also cutting back her pain meds because they thought she was becoming too dependent---------(ummmm, I wonder way). She was dying, and they had her in rehab!!! This was the last week of her life, and they were flopping a dying woman around like a piece of meat. I'll never forget them trying to get her to comb her own hair, and she was too weak for that. They were having her dress in her normal street clothes=====my God, she was losing her mind she was so sick. One night she asked if the mall was outside her room, and asked when we were going out there. Last night my husband and I went to my Dad's house to pick up their bedroom furniture, as my Dad wanted us to have it because he's selling the house. They only had the new furniture over a year---my mother loved it. I feel weird having it. During the move, I picked up all her medical records, as I told my Dad when I get some strength I'm reviewing them to see what went wrong. When I'm done with them, I swear that hospital will be naming that "new cancer wing" they're so proud of after her. This is the worst neglect I have ever witnessed. When I found out I had POTS, I had already started to feel a little better before I was diagnosed. I read about how other POTs patients were treated so terribly by the medical community, and this is when I formed a local support group with another person who didn't have POTS, but her husband had a form of ANS dysfunction. We had the group about 3 years, and heard many sad sories of docs being dismissive, and even abusive. I still have not heard anything so insane as what happened to my mother---------------------ALMOST, but not quite. I have heard some doozies that came pretty close. Obviously things have progressed for the worse with my health, and I can't work in a support group consistantly anymore, but I still hear the same old stories over and over again. How can you have respect for doctors who seem dumber then a box of rocks? I guess our bad experiences make us a bit wiser, and more guarded on who we let take care of our medical needs. We must advocate for ourselves, and if some of us can't, find someone who will. If something ever happens, and you suspect some kind of malpractice or criminal intent, never, ever have medical records subpenaed by an attorney. This gives them time to destroy incriminating records. Any collection of records must be collected with surprise search warrent if the attorney thinks there's a probable cause. If there's exigent circumstances in which there may be imminent destruction of evidence, records may be obtained without warrent. Of course this would be in extreme circumstances in cases such as direct abuse by a physician, malpractice, or criminal intent. We can't live being paranoid, but it's good to know some things in advance. Better to be informed----just in case.......... Maxine :0)

It looks like this site was a bit slow when I posted, and I kept pushing submit, submit, submit, submit------- Then I gave up, only to come back and see four posts---lol. Oh well, maybe neurologists need to see this four times! Why don't they get it? They probably can't wrap their head around it--------------------it's not cut and dry enough. I have to say that neurologists have been the least likely to help me, and it's difficult to believe, as I have more then ANS dysfunction going on as you can see from my signature line. However, my issues are more complex, so here we go again--------too much to wrap their head around. How insane is THAT? Maxine :0)

It still puzzles me that neurologists seem to know so little on the ANS. The Autonomic Nervous System IS part of the nervous system? Maxine :0)

It still puzzles me that neurologists seem to know so little on the ANS. The Autonomic Nervous System IS part of the nervous system? Maxine :0)

It still puzzles me that neurologists seem to know so little on the ANS. The Autonomic Nervous System IS part of the nervous system? Maxine :0)