Maxine

It's so hard to tell with woman, because we can have pain in other areas also for a heart attack. I get the pain in the mid back, the left shoulder, my neck, the upper gut, and in my chest. I have EDS, and have pain related to that and to my spine instability. I often have "referred" pain. I'm always dealing with "gas", bloated, and feeling upper gut pressure. If I was having a heart attack I often wonder if I would know it, as I have the sign of it every day in some form or another. I had cardiac workups that said my heart is normal---echo stress test in 2005, many echos, EKGs, and finally a Cardiac CT, but unfortunately they could get my heart to slow down enough (they need it at 60 BPM) for it to check the arteries for soft plaque. However, they did do a calcium scoring with the CT scan, and my score was -0-. This means 90 percent of woman my age have more calcium buildup in their heart then I do. I was happy, but surprised because my HDL cholesterol has always been too low, and my LDL at borderline. Tryclicerides above normal, but not terribly. Because my HDL has always been low, so I was scared----still am sometimes. But the nurse that worked for this cardiologist said a calcium score of -0- is excellant, and that the doctor hasn't seen this in a while. She said my risk was low. I can't say I never worry, but having a good cardiologist run the proper testing to rule out CAD can put your mind at ease. It's so upsetting the have tachycardia and chest pain----especially at the same time----it's downright scary. It's also difficult to be taken seriously as a woman, so we're up against a lot when we go to an ER like this. However, chest pain always has to be checked out and taken seriously regardless if the physicians in the ER believe it or not----that's just the rules. Don't let anyone NOT take you seriously. If you feel any question in your mind on possible risks, get it checked out. Don't worry about anything other then your pain, and getting some peace of mind. You deserve only the best possible care------we all do. It does sound like you should be OK since you recently saw your cardiologist, and because you see him on a regular basis. I would call the doc just to be sure. Has he done a FULL cardiac workup? BIG HUG to you, Maxine :0)

Flop, My brother had CA levels tested-----I rememeber his talling about this. This is not an accurate test to screen for cancer. I just called my brother's oncologist's office to see about testing for lynch syndrome---- http://www.mayoclinic.com/health/lynch-syndrome/DS00669 , since my brother died of colon cancer, my mother died of abdominal cancer 2 years beofre that, her brother died of colon cancer two weeks after she died, her sister died of brain cancer in 2003, and my other aunt had a brain tumor removed in late 2001. The receptionist that answered the phone at the oncologist's office said she would ask him about the genetic testing and call me back. I don't know if I have to be the cancer patient to be screened. My brother was offered the trsting by the oncologist but refused it. Maxine :0)

Thanks Anna, I'll be asking my PCP about genetic testing tomorrow. My brother's oncologist wanted him to do this, but he didn't want to do it. I don't think he understood how this could affect his family----his two grown children. I sent you a PM. Maxine :0)

Thank you all so much for your valuable information. Poohbear, I love the idea about having a list----and if I were a nurse I would LOVE IT! Less work.... Julie, I never thought of hormone replacements affecting the EDS vascular issues. That is so important for a gynochologist to know! I don't think this doctor is the right one for me, as she really seemed apathetic, especially ignoring the whole cancer issue with my family. My mother had bleeding from "down below"-----the reason I say "down below" is because it could have been the vaginal area, but also could have been urethra area, considering they did find a small tumor in the bladder. My mother had a horrible gynochologist----LAZY----AND STUPID. It's hard to believe she worked for this woman part time when the receptionist wasn't there. They were friends, and she came to a couple birthday parties and cookouts at my parents several years ago. I went to this doc once when I was first crashing with POTS to see if my hormones could be causing it. I was 41 years old-----I thought it was possible. I was really desparate then, and wanted a reason for this mayhem that was going on inside my body. She actually laughed at me, and told me to "RELAX". The last CT scan done on my mother (which was sat on for 8 days while they sent her to PHYSICAL rehab.) showed cancer in her lungs, abdominal cavity, pancreas, stomach, liver, and bladder. My mother had her uterus and her overies. She was the only woman in her family who didn't have fibroids, all the rest of my aunts had to have hysterectomies---Three of them. My mother's older sister had a hysterectomy in 1970 due to huge fibroids. They left her overies in her, and in 1991 she kept having bladder infections----or so they thought. She had to go in for IV antibiotics, and some other kind of procedure that I don't remember. She got another opinion, and they said she had a large cyst on one of the overies. Well, when the opened her up, it was the size of a soccer ball, and they ended up removing six inches of her bowel-----they overies were gone----probably consumed by the cyst. One year later she was diagnosed with a huge cancerous brain tumor, that was wrapped around her brain stem, and went up the side of her head. She had to go down to Cincinnati to have her surgery, and we were told she may not survive. She did for over 10 years, but had a stroke during surgery, and was never able to work or drive again. She had to learn how to talk, walk, write ect. after this. She had a great attitude----I was really close to her. They couldn't get all of the tumor, so she had radiation therapy. She died of a subarachnoid hemmorage in Early 2003. My other aunt in Calf. had fibroids, and she also had a brain tumor removed. She still has a small part of it left. Her doctor didn't take her seriously when she had strange symptoms. The tumor was in a part of her brain that gave her symptoms much like ours, someone with ANS dysfunction. She finally collapsed on the floor, and when she go to the hospital they did a CT scan and found the tumor. The surgeon said she would have died within 24 hours. I remember talking with my Aunt in Calf. many times on the phone, as I was the only one who didn't think she was crazy. We have developed a close bond since then. We have always been close----all of my mother's sisters----we were a close family, but my Aunt and I have an understanding of eachother that know one else has. I remember my second or third appointment with Dr. Grubb. I told him about my two aunts with brain tumors, and he immediately wrote up an order for an MRI of brain and neck. This is how I found out about my neck issues in 2002. To this day the neurosurgeons I have seen blow off the lesions in my brain, the collection of fluid in mastoid area (that where my other aunt's tumor was). Some MRIs say fluid in mastoid area, some say opacification (it's been on all MRIs and Ct scans for 5 years). NO history of mastoiditis---and I just had a full workup by an ENT. With the missing left vertebral artery on the left on the brain MRIs, but yet it's showing up in my neck, it would seem locigal to investigate what's going on back there considering the cervical/cranial instability.......(oh, wait! That isn't real either). Dr. Grubb is the doctor that got the ball rolling for anything to be investigated. I have an orthopedic surgeon that has validated the instability, but he doesn't work with vascular issues. Something isn't right back there. It's so difficult when only half the docs do thier job. I do see my endocrinologist on March 4th. I'll see what happens with that. MY thyroid antibodies are very hihg as you can see from another post. However, the thyroid levels are fine----- . Thanks so much for your help! I will work on that list poohbear. Maxine :0)

Dani, This is the most disabling symptom for me also. I can muddle through the rest, although still not able to function at normal capacity, I can at least venture out on my own for small errands, have somewhat of a social life, and get a few things done around the house that my body allows me to do. When I'm having those spells---(which a friend of mine and I nick named "George" back in the 80s when I first experienced them), I can't do much of anything. I lay pretty low when this is going on. Back in the 80s I took phenobarbitol, and it was like the attack never happened. I know these spells are of neurologic origin, as phenobarbitol is a seziure drug. Back in the early 80s these spells only lasted a few months, and I was diagnosed with MVP at the time---(now I'm told I don't have this). It's like the phenobarbitol had a long term effect (I stopped taking that in about 6 months), as I didn't need meds again until 1990. When the spells came back they were worse, and I was given beta blockers, and xanax. The two worked well together, and I stayed on the xanax for only 6 months. This was my only symptom other then the brief chronic fatigue I mentioned before. I didn't crash completely until 2000, and in mid 2001 was diagnosed with POTS, then the rest followed---- . I hope "George" leaves you alone quickly! I know they come in cycles, so they will go away---- . HUGs, Maxine :0)

Yesterday I went to my gynocologist for my check up. I skipped a year, as I just didn't think of it due to being overwhelmed with other doctors appts., tests, ect. All pap tests have come out good in the past--(knock on wood). I told the doctor this, and she said if pap tests came out good every year, that I could wait every three years to have this done. She said she would send me an order for a mammo gram yearly. She had a student doctor there that was very good, and understanding. However, I don't know if it's necessary to tell them about my medical history. I told her what I was diagnosed with, and she was great. The nurse that filled out the clinical information sheet looked at me like I was lying about all of it. The nurse must have filled the doctor in, as she came into the room looking like a deer looking at the headlights. REALLY BIZARRE. The reason I told the student doc my medical history is because she asked if I had any medical problems. I was brief, and only took about 5 minutes to summarize the whole mess. Same thing with the nurse, and I answered all her questions with brief answers. I asked the doctor if I should have my hormones tested because I have been missing periods, and then they start up again. I'm 50 years old, and asked about menopause. I said my POTS symptoms have been worse near my cycle, and I didn't have this problem before. She cut me off and said it wasn't necessary, and that my hormones will by "up and down", and that she wouldn't do it unless she was going to put me on hormone therapy. she said this wasn't needed for me, so no need to do any blood work. I had told the nurse that I didn't know if there was a history of ovarian cancer because we don't know where my mother's cancer started. Her whole abdomen was infiltrated----(it was everywhere), and since the idiot docs she had at the time didn't know about her cancer until 48 hours before she died, we don't know where the cancer began. I have no idea why the doctor didn't seem concerned about this at all. There was no mention of any type of screening tests for ovarian cancer. I had to bring up the mammogram, and she wrote up an order for this. this was weird, as she was the one who said she would send me an order for this every year, but somehow forgot that I need one done now, as I skipped a year. I thought the doctor's nature was apathetic......and when I left I felt the appointment was incomplete. With my POTS getting worse during my cycle, I think I should have had my hormone levels tested. I felt like I was at was at a clinic that practices miminal medicine, and that perhaps the doctors get credit for NOT ordering necessary testing. It might be time to move on-------------------ya think? I remember one nurse practioner that worked for an OB/GYN who was very good. I went to them years ago, but the doctor retired and went into teaching. He was really nice also. He would have his patients come into his office and explain everything after we got dressed. He was a kindly gentleman. If it wasn't for that nurse practioner, my hashemoto's thyroid disease would have not been caught. She looked at my chart---(wow, imagine that!), and she ordered blood work due to a family history of thyroid disease. Mine was caught early. I was very lucky to have such a great doctor back then---Mid 90s, as my hashemoto's was diagnosed in 1995. Question; do you give your medical history to all MDs? I would think this is necessary, but this doc seem annoyed. Also, is it normal to have crampy pain--(and a little stabbing pain) after a pap smear. I don't usually get this, not that I remember anyway. I'm telling you-----I get so disgusted. Maxine :0)

Sometimes I think people go to medical school to become doctors for Status, and possibly money depending on what their speciality is. Docs like this can't be in it because he/she actually has the passion for helping their patients. Note to doctors; Having an "MD" is not a "status" symbol. It means "medical doctor". Unfortunately in some cases the "MD" stands for, "MOST DANGEROUS", I'm sorry this "most dangerous" man treated you like this. HUGS, Maxine :0)

Nicotine is a vaso constrictor, and it's possible it was helping relieve the blood pooling when you smoked. With you being pregnant it's difficult to know what meds would be safe for you right now. This is something you definately need to follow up with your doctor about. It's a horrible feeling when the adrenaline starts pumping-----I know, because I have been having some set backs myself. Someone suggested a little caffiene, but I was afraid, as who would want to add a stimulant to an already overstimulated person? I'm assuming when we dilate too much, our adrenaline is trying to compensate and help the vessels constrict. I know when this is happening to me, as I can see the nice plump veins in my hands disappear. Check your hands out when this happens. I know when I'm feeling really sluggish a few sips of coke helped me out, and I felt energized. However, then I end up with palpitations----skipped beats. Dr. Grubb suggested green tea as it's less caffiene. We discussed florinef, and midodrine, and with my upper spine compression and vertebral artery issue I can't have SPIKES in BP, so I have to use more natural methods. I'm already on wellbutrin to help constrict the vessels, and Dr. McDonnell from the NIH study was already concerned about BP spikes, but so far have not had sustained spikes in BP, so I'm still on the same low dose. I have had some spikes during the adrenaline surges, but BP goes back to normal or my low BPs. How is your BP during the attacks? I do get a little concerned because my diastolic will still be 80s, and my systolic will get low------->i.e. 102/86. I hope this passes for you quickly. Klonopin helps me also. I usually take half the prescribed dose, bu ob really bad days I take the full dose. BIG HUG, Maxine :0)

Persephone, Probably your NCS? Some people have both NCS AND POTS. My PCP wanted me to get checked for this, but my unstable BPs and heart rates are most likely secondary to the brain stem compression, which in turn affects my autonomic nervous system. This is what has been put in clinical notes by more then one doctor. I have low BP with normal heart rates all the time. I often wonder if I have those really distrubing heart flip flops, just before the adrenaline flows and my heart starts racing, that it could be due to low BP and low to noraml heart rate. It comes on so suddenly, and I have to squat down quickly. Keep us posted on what you find out. Maxine :0)

I just wanted say my heart goes out to you, as I can't imagine that all day. It's so disabling when I get it sometimes. Can you talk to your doctor about possibly changing your meds so you can function a little better? I take wellbutrin to help constrict my blood vessels. My POTs is secondary to the EDS which also causes poor vascular tone. I've been having some spells with my heart in the last few weeks, with some flip flops, adrenaline surges, and tachycardia. I take my full dose of klonopin on really bad days, otherwise I normally take half. Sending a BIG HUG to you. Maxine :0)

I've just had the usual amount of carbocaine, and I was numb enough for a tooth extraction. I definately have a pretty intense case of EDS. Maxine :0)

Definately follow up with your doctor about your tongue being numb. Anesthesia affected my OI to an extent making my BP unstable with swings of highs and lows for about two to three weeks after. The surgical staff, and the ICU staff did a really good job of keeping me stable, so I felt good after the first 24 hours for being put under for almost 5 hours. I did have steroids pumped into my IVs for 24 hours also. I didn't notice the swings in BP until after I got home. Of course you didn't have the wonderful medical support I had, so I was probably dealing with the stress of the trip home, and we didn't have any support at home. My husband worked, and had to go back to work the following week, so I was on my own. I did pretty good for having pretty serious spine surgery. My husband's sister made a couple of meals for us, and a friend of theirs made a nice meal for us too--- That really helped since my husband isn't one to cook. He'll do anything else, but doesn't like to cook. Do you have someone to take care of you at home? You need someone to lean on right now. General anesthesia can be rough on us, and it sounds like you didn't have adequate care, and I'm wondering if you have the right medical support for your orthostatic issues. Maxine :0)

Thanks Jan! Getting there is a real drag though. I took my synthroid a little late today at 4:30, and my Bp shot up to 136/96----heart rate 92. I felt my vessels begin to constrict---and felt creppy crawly----so I took my BP and HR-----sure enough it was high. I never had issues with synthroid in all the years I have taken it. My period is over now, so I don't get it. I did take my beta blocker late too.....soooo that I hope menopause ends this up and down sttuff. I can deal with my OI issues, as those have fixes------------this doesn't really......klonopin... The funny thing is that I didn't get symptomatic before or during periods-----this was before the last few months. Hormones were never really an issue for me before. Who knows though, because a lot of docs don't always do their job, so maybe I haven't been tested to the extent I need to be. Maxine :0)

Thank you so much. Firewatcher, A couple of doctors said this bulge is more like an edema swelling, and it's it's on the side of my neck near my cartoid area down by clavicle. It could be possible vascular congestion, but so far no doctor has wanted to investigate this further. I must have decent blood flow, as the ultra sound of my neck was normal, even showing flow in the left vertebral artery which is really weird since there's no left vertebral on my brain MRAs-----2 of them! NIH verefied this! No one wants to investigate what could be going on with the vertebral artery on the left????????-------(what happened to it in the cervical/cranial area?) I asked my PCP to order the ultra sound. Keep in mind the ultra sound was done while lying down. Blood work for LH & FsH wasn't done---- http://www.nlm.nih.gov/medlineplus/ency/article/003708.htm http://www.med.umich.edu/1libr/aha/aha_fshblood_crs.htm I'll ask my gynochologist if she'll order this blood work for me. I take .75 of thyroid medication daily. I was started out on .25 in 1995, and I was on this a long time before it was increased to .50. I was changed to .75 in 2003 I think--------something like that. I do have an endocrinologist, but I've been having my PCP order my thyroid levels. My endocrnioloigist is the one that put me on a large monthly dose of vitamin D. I was afraid to take such a high dose fearing the same reaction I got on the smaller doses I took. It seems to cause adrenaline surges, dizziness, and aggravate POTs symptoms. Who would believe that? If I went to an appt. and told him this he wouldn't believe it, and think I'm being non compliant. I can't figure it out. Dr. Grubb said just try getting more sun-----he didn't know what to say. I'm sure he wanted to help, but who would know why my body doesn't like vitamin D. Seriously, I tried to take it over and over again, and I got flu type symptoms, and my pots would gets worse. When I tried that liquid form of it in costco one day---I had a very bad reaction, my heart was pounding so fast, and I was so dizzy. However, it was over quickly------then I wanted to go back to Costco. How about narrow pulse pressures-----how many of you deal with this? One day my bp was 78/68----standing. I took it an hour ago, and it was 102/80. My system feels so wacked out! Maybe I should be one of those people to go to Mayo. I've been going to the Cleveland Clinic, but this was all for the spine issues and brain lesions. Maxine :0)

A couple weeks ago I called Dr. Grubb's office about what's been going on with me lately. The poor nurse probably thought I was nuts. I just sat there talking is circles. She called me back the next morning, and I was still kind of out of it. She did ask if I just woke up. I'm going thorugh menopause, and I know so little about this. I have researched so many other things regarding POTS, EDS, spine instability----and related things, but never read much about the effects of manopause on POTS. Dr. Grubb told me to be prepared, as menopause can make POTS worse. I just didn't take it all that seriously, and now here I am having some pretty intense symptoms-------------(that's what I get for not paying attention). The spine instability, pain, and disabling symptoms from that have overwhelmed me, as finding someone to help me with that has been a daunting task. Of course this has put some of the other health issues on the back burner. As long as my heart is behaving, I usually focus my limited energy on finding good neurologists, and neurosurgeons to work with me on my spine instability, brain lesions, and possible vascular congestion from the vertebral artery issues in my cervical/cranial junction along with an unexplained fluid buildup in mastoid area. For months I have been going through some changes. I noticed hot flashes over a year ago. They didn't bother me other then making me temporarily hot. No other symptom changes in my POTS, other then the usual OI stuff. I have skipped having periods for several months, then they start back up. This time when they started back up they were heavier then usual. For me the flow was always medium to light, and only for 2-3 days----always since age 12. Now the flow is still about 3 days, maybe 4, but the flow was heavier-------(but still not like some woman I hear from who have very heavy flow for 7 days!) I felt so horrible with the peroid I had in Dec., and one day I went to wash my hair in the morning, and my hear started to beat wildly----like it was coming disconnected from the vessels. I got down and got into a ball on the floor, and it seemd to slow it down some, but I was left still pretty tachy, and very skakey. This passed, but from this point on, I always wash my hair in the morning before my husband goes to work, because when I had this spell, I felt like passing out. I always take a bath at night, but wash my hair, and wash up again in the morning. I don't take full showers by myself anymore because I tend to blood pool the worst in the shower. I'm not sure I can handle going back to the old days of doing nothing by myself because I'm so limited. Later next week, I see my gynochologist, and hopefully she can test some hormones to see where I'm at with that. l had my thyroid tested BY PCP just in case that is overactive since I have hashemotos thyroid disease. ALL levels were in the normal range which means thyroid meds are working, but antibodies were HIGH. referance ranges T4---8.6 4.5---12.5 T3 uptake 29.6 24.0---35.0 TSH 2.110 0.40----4.40 referance range ANTI-MICROSOMAL AB---- 1201 <35 THYROID-THYROGLOBULIN--- 2924 <40 Now this month, my period came, and I didn't really notice anything DURING, and it seemed to be back to the usual flow I had most of my life. However, BEFORE my period, the whole week seemed unstable. I was having those morning spells again, but sometimes would have them later in the day. I just feel more adrenaline lately. I was taking a little extra klonopin (still within the prescribed dose---because I never took full dose before), and this did help some. I think it just helped me handle it better. I think it also helped the adrenaline surges as well. On Dec. 19th we went to a Christmas party, and a 6ft. 5in. drunk man got a little overly excited, and grabbed my by my neck and pulled me over to him, kissed me on the cheek saying, "God Bless You"! My first thought are, what is this going to do to me? Sunday morning rolled around, and I thought I might be OK, as I had my usual aches and pains. Then on Dec. 22nd. we had the little kids in the family over to make Christmas cookies. Thankfully, I only had to make the dough---as my dad's fiance, and the other two moms did all the cookie cutting and work. ONE PROBLEM THOUGH! I went to give the little 5 year old grandaughter of my dad's fiance a hug, and when she hugged me she picked her feet up off the floor! I quickly got down to the floor, but I felt the pain, and still continue to feel it. Keep in mind my neck is incredibly unstable already. Now I'm sitting here wondering which is causing what? Dr. Grubb told me that the upper spine problems and EDS are likely the cause of my dysautonomia/POTS............................. Could this little accident have made things worse? I don't know..... I did have that spell in early Dec. before the further neck injuries. This is when I had the heavy period. So is it hormones, or is it worsening spine issues? Tuesday I go to the orthopedic surgeon for a special kind of CT with my head turned to the left, and to the right in the hopes of getting a better picture of the instability. We have to drive 3 hours, and we have to leave early to get there for the CT beofre the appt. I'm not sure what to think? I guess we can see how my hormone testing goes. Any other tricks of the trade on how to handle these spells? I pray I never get SVT issues. I couldn't handle that---especially on top of the other issues. The tachycardia I experienced seemed to have an adrenaline rush with it, and the heart pounding is short, but still tachy for a while after, but not severe. Very, very shakey though----and pulse in neck seems weak sometimes when this happens---------SCARY. This tells me it must be intense OI----blood pooling. I notice that during these spells my veins constrict, and I don't see the usual bulging veins in my hands. This morning I had a mild spell, and I feel light headed still. My neck is really bulging though----that swelling on the right side of my neck down near clavicle is worse. EDS doc suggested possible vascular congestion due to the missing left vertebral artery. Dr. Grubb's nurse took all the information, but I probably confused her, as I was rambling trying to think of the various causes. She said she would talk with Dr. Grubb-----I haven't heard anything back. I won't call again, as I know Dr. Grubb has a lot going on-----I just can't bother him, so I'll work with other docs right now. Other docs can send notes to Dr. Grubb to keep him in the loop. I know he requested the EDS note fr, My EDS doc. Maxine :0)

On a positive note, I would like to add that our family was blessed with good nurses caring for my mother when she was in her last 48 hours of life. The doctors didn't know what they were doing, but the nurses sensed she was very ill, and continued to fight the doctors to get her the appropriate amount of pain medication. It was one female nurse, and one male. They looked at us like they wanted to tell us how intensely stupid these docs must be for not knowing my mother was dying of cancer until the last 48 hours of her life. The things some of these nurses have to hide must be hideous. Those poor nurses were thrown a monumental task of trying to keep a straight face while they knew a huge mistake was made. There's a lot of "burnt out" nurses that can come accross as callous, and most people can handle that if they get the basic care they need. It's the ones who are abusive, stepping way out of the line that need to have their license pulled before something tragic happens. When this nurse did this to me, she worked for a tursted physician that I placed a lot of hope in. I was so devastated that I fell into a deep depression, and had incredible anxiety----------- who was going to help me now? Now I have come to terms with it for the most part, although I still struggle to trust nurses in that particular practice. It's sad I have to watch my back like that. Persephone, that's really a tough situation! It must have been so scary to have these nurses not take your need to be in a supine position seriously. Here you are, vulerable and weak after general anesthesia, and you have a couple of idiots like this putting your life at risk---showing no sensitivity whatsoever. I hope you're doing OK. Let us know. Maxine :0)

This week I had my vision go yellow, and I couldn't see after looking outside watching my dog in the yard. The bright sunlight must have been too intense for me, because when I shut the door all I could see was yellow for several seconds. I know I have retinal thinning, but that's all I know. I also have some brain lesions, but they haven't been taken very seriously as anything significant. Maxine :0)

In regards to filing a complaint-----------please do it. Even though you feel that it might not get you anywhere, if enough people complain about abusive behaviour like this, something may get done. I feel your frustration! "STALKER NURSE"-----the one that stalked me out on this forum due to her own sick agenda to verbally abuse me, along with trying to discredit my need for SSDI-----she has no idea how sick I am. I know there was more then one person involved in this stupid escapade. Otherwise, why would a nurse that I barely know decide to get into my profile to read all of my postings in this forum? Basically, it was a personal attack. It was even more stunning who this nurse worked for! In the end, I filed a complaint. However, the concerted efforts by more then one person involved me being micro-managed by this physician's office-----like I did something wrong. I don't understand how a sociopath like this can keep her job as a nurse caring for physically sick people. Tonight I sit and look at CNN, and see horrible tragic news of people dying in Haiti due to the Earthquake, but there would be less people dying if they had safe hospitals, and the medical staff to help them save more people-------------just so sad and tragic. I see all kinds of wonderful medical professionals volunteering their time to help, along with many other aids-------------Then you hear about these idiots in our hospitals in the US and the UK causing heart ache just because they want to---------making perfectly equipped hospitals UNSAFE. I'm glad your home safe Persephone. I think psychological screening needs to be done on a regular basis on medical professionals. NEEDLESS SUFFERING. Keep your head held high. Maxine :0)

Report the nurse for patient abuse. Just because they are nurses does not make them the authority on what to do when a person faints due to OI. The first thing I do when I feel near syncope is to get down on the ground. Obviously, both of those nurses have a few screws loose, and they both need their nursing license taken away. What is the world?????????? I'm sorry you had to deal with more idiots in your life---haven't we all had enough of this?? Maxine :0)

I definately feel worse when BP is high. When my BP is really low I seem to have less tachycardia. When I have sudden episodes of tachycardia, despite being on the porpranolol, my BPs are usually on the high side. I'm figuring that my BPs run so low at times that my body pumps into high gear trying to fix things and my body goes into ANS meltdown. I feel really bad when this happens, and I'm become very limited. My OI becomes much worsem then what it is when my BP is low. With low BP I feel rough, and like I'm climbing a mountain when trying to run errands, chores, socialize ect. However, I'm more functional then I am when it's high-------definately. I've just been fighting a bout of high BP spells that were sporadic----------------------basically my BP was all over the place, like the switch for that was BROKE. This happened after waking up one morning with mid thoracic spine pain that was beyond my usual. Maxine :0)

It seems like a lot of people with an English/Irish background have EDS. Especially seeing a website from England/UK. My family gene tree goes back to England and Ireland. We have some Swiss from my Grandfather's side (my Dad's father), but we're mostly English/Irish. When I read the Family History that my mother worked on for several years, some of her family was from England. My grandfather swore he was Irish, but he was both English and Irish. Actually the EDS probably comes from my father's side of the family---------mostly Irish. Mkoven, the problem with wearing the collar is that you can develop atrophy of the muscles in your neck. I was told to wear it only in the car, or when my symptoms become unbearable. When I wear it in the car, it's nice because it relieves the symptoms long enough to help me get errands done, or enjoy a social outing. My muscles already have some atrophy, and now my tendons and ligaments are having severe spasms that are very difficult to explain. Imagine a deep tearing and pulling sensation that stuns you making your mouth pop open. Then you sit there wondering how doctors don't get this, and how much longer your can walk around like this????? I'm supposed to see a surgeon next week for a special kind of CT scan -------- rotating the head to the left and right. My geneticist felt this would show the degree of my instability better. Right now I have some kind of fluid buildup by my right mastoid area, but no history of ear infections, and had a complete ENT workup. There's no explanation of where the fluid comes from, although it's been there since 2005. There's also the swelling/edema in the right side of my my neck near clavicle----my husband first noticed this in May, and it hasn't gone away----it's just gotten bigger-----no explanation for this either. I also have tissue growth on the odontoid bone, and have been told by at least 5 doctors that this is putting pressure on my brain stem, but unfortunately have been blown off by many neurosurgeons which is a shame because I have so many symptoms of brain stem compression. Two surgeons have taken this seriously----one neuro, one orthopedic. However, the neurosurgeon is not an option any longer, and I need a neurosurgeon also due to the vascular issue back there in my cervical/cranial area. The left vertebral artery has shown up in my neck, but all MRAs of my brain show it missing on the left. I still have no explanation what happened to this artery between the cervical/cranial junction. I have copies of my MRAs on CD-----I wish I could show you. There's just a big black hole where the artery should be in my brain, but yet an ultra sound of my neck showed blood flow in the artery in my neck. Meanwhile I have scary sudden headaches, and not one local doctor who can follow this. There's one neurologist I have seen in the past that has no clue on the seriousness of EDS. She's convinced my headaches are migraine related. I don not have migraine, and the headaches stem from my neck, or they are sudden onset stabbing/throbbing pain type headaches that come and go-----sometimes with the way I move my neck. This is scary, scary stuff to be dealing with when all the doctors who understand it are out of town. My geneticst is going to be sending his clinical notes to my local physicians, and to the Cleveland Clinic in the hopes that they'll realize the seriousness of my condition. Right now my thoracic spine is also giving me a lot of trouble, as the T-8 disk is desiccated. Lots and lots of pain, and it's really diffiuclt to watch my body mechanics, as any turns or twists take the wind right out of me. Do you realize how difficult it is for a very hypermobile person to control the fluidity of thier movements? A very fluid person trying to be robotic and calculated in every movement as our natural way of moving can damage us further. Every move must be calculated, and this just isn't realistic. I can't even get out of bed without making sure my feet are in the right position, and this also goes for getting up from a seated position. Moves other people never have to think about. Looking out my livingroom window--------(get up and physically turn my WHOLE body around). Crossing my legs will hyperextend my knees-------the list goes on and on.............................................................. Maxine :0)

Hi, Type 2 classical EDS isn't "mild"-----although it's has been said it's the milder version of of classical, people with this type still have the same problems as classical type 1, the part that's only milder is the skin manifestations. When I went to NIH I aksed Dr. McDonnell about this, as I looked up type 2 classical when I got my clinical notes from her, and one website said it was the "mild" form of classical. I told her I was confused because my subluxations, spine instability, poor vascular tone, ect. felt pretty serious. She said it was, and the only mild part for me is the skin involvement. In fact, from what I'm finding out, my excessive diverticuli in large intestine, and the very large 5cm diverticuli in small intestine is probably from my EDS. When I was at the EDs study at NIH in 2008, my diagnosis was changed from hypermobile EDS to Classical. I think some geneticists are just calling it "classical" now. I have classical EDS with hypermobility, skin and vascular involvement. My spine is greatly affected, especially in cervical/cranial region. Geneticists are now finding that there may be crossovers of vascular components into other types of EDS. Maxine :0)

Strange that I should find this POST----this morning I went back to sleep to catch another hour or so, and I had a really vivid dream. It was kind of a nightmare in that I went to a government funded therapist to dicuss how overwhelmed I am over multiple health issues, and how I'm not taken seriously by local doctors, and how I have to go out of town to see other doctors who specialize is EDS, spine instability---ect. He was so apathetic, and I turned around to find that he drifted into another room. The next thing I know I'm with another therapist who is worse, and carrying on a conversation with her friends. I left and drifted down the road walking in no particular direction. I also have the same recurring dreams of being in some kind of college campus-----I'm either lost, or have anxiety of not being able to handle the courses. The weird thing is these dreams have been on going for years, although I do have other strange dreams. I do see a therapist on occasion, but he's been great. I have another one that I saw earlier when I was first diagnosed, and she's the one who validated my physical problems, and encouraged me to move forward finding the right doctors to help me. I recent went back to her, as insurance covers her better, and this time she seemed a bit disconnected----then I had this dream. I know beta blockers can make people dream, and so can klonopin, and I take both. I take wellbutrin to help constrict my blood vessels, and I haven't noticed it affecting my sleep. I find it strange I sometimes have the same recurring dream about being on some kind of college campus. I guess I'd rather deal with the dreams then the symptoms. I don't have them every night. Maxine :0)

It's hard to tell what could cause your pain. I did have one doc tell me I had fibromyalgia once, but I don't have it. My PCP said when some docs don't know what's causing the pain, they'll say fibro. Fibromyalgia is real, and doctors shouldn't use this as a waste basket diagnosis when they're too lazy to investigate the cause of pain further. My EDS geneticist said my pain is EDS related, as it's caused my spine instability, and all those nerves being impinged. My thoracic spine also sticks out to the side just below my neck. With EDS I'm told to stay away from chiropractors. MY guess would be the EDS is over extending your joints and ligaments in the area irritating the nerves. On Dec 22nd. I had a five year old give me an awkward hug, and decided to pick her legs up and hang from my neck------------- Then I had a drunk 70 years old 6 ft. 3in. man pull me over to him BY MY NECK at a Dec. 19th Christmas party and vigorously say "GOD BLESS YOU! Needless to say, my neck isn't feeling good. In Ohio it's a lovely 25 degrees............. we're expecting 3 to 5 in. of snow, and temps to dip to around 20 for the high. I'm not adjusting to the cold well at all. My husband has to deliver the mail in it. The cold weather can affect all of your problems and increse levels of pain. I hope you feel better soon! Maxine :0)

I'm sorry you're feel so bad---both of you! Yes, even with minor virus, my heart rate and BP get messed up more then my usual. In fact, I have been struggling with OI worse then usual, and my heart rate would jump into sudden bouts of tachycardia----------------and huge adrenaline rushes. I can't figure out what's causing it------------I did have a virus a while back, and I might have one now, but it's mild. I don't think it's causing this POTS Hole I'm in now. Maxine :0)