Maxine

Out of respect for her family, I called her daughter to get her permission to post about her mother. She had no problem, and we both agreed that this information needs to be shared, as it may help others. "Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS." Hopefully this link will work. http://www.ednf.org/index.php?option=com_d...Itemid=88889062 Even if someone is NOT diagnosed with "vascular type IV" , they still need to have thier aorta checked regularly. Other types of EDS CAN have vascular complications, or vascular involvement, but it's considered to be less likely. There may be certain crossovers of other types of EDS with components of vascular type. My friend was diagnosed with hypermobile type EDS, but her aorta thinned and ruptured. The cardiac echo did not pick up the wall of the aorta thinning. The wild swings of her blood pressure with narrow pulse pressures may have contributed to the rupture. She also had a bowel resection a couple years ago that had a very difficult time healing, and this is what prompted investigating weather or not she has EDS----------------She saw a geneticist and got the confirmed diagnosis not that long ago----maybe several months. Although it's not likely for a large population of other types of EDS other then type IV vascular to have medium and large vessels rupture, it's still important that Echo cardiograms be done on a regular basis, and this should be extensive covering the corroded arteries also. Even though my friend had her echo cardiogram done, it did not pick up the wall thinning of her aorta. This could have possibly happened suddenly due to the very malignant BPs she was having. I really don't know exactly how it happened other then it was after surgery which was NOT near her aorta, as it was her lower spine. She informed the docs in the ERs of her situation, but told me she wasn't taken seriously. Maxine :0)

GREAT NEWS!

Julie, I'm so glad your brother had not suffered the same fate as my friend. I guess I shouldn't be surprised on what happened to your brother, but somehow this dismissive attitude never stops amazing me. How can someone blow off chest pain when they know an aorta is enlarged already? Today I feel so lost--------------------I've witnessed so much neglect from the medical community, both personal, and what I have seen with so many of your experiences. I'm so sick of the obtuse state of mind of some of these doctors-------------or could they just be very, very lazy???? There's obvious discrimination-----especially with woman. I would tell you more about her experiences, and experiences in my family, but there's such egregious neglect that it's too disturbing. Thanks for all your support an understaning, her family really needs your thoughts and prayers. Maxine :0) MKoven please keep us posted on your condition-------------I'm glad they are watching you closely.

I wanted to post this link to an operative link on aortic ruptures; http://ejcts.ctsnetjournals.org/cgi/content/full/28/4/650 I seems normal clamping can cause more bleeding, and make the survival rate less likely. More vascular surgeons, and other general surgeons need to learn more about connective tissue diseases. Maxine :0)

Yes Mkoven, avoiding high BP swings, and narrow pulse pressures in very important. I know we need to avoid really low BPs, but better to be a bit low then too high with EDS. When I was at the NIH study, Dr McDonnell said I need to watch mine closely due to the enlarged right vertebral artery making up for the one missing on the left. Due to my cervical/cranial instability kinking this artery, and the poor vascular tone, I have been working with the Cleveland Clinc on understanding the vascular complications with ALL types of EDS. I had a good healthy debate with the NSG I saw there, and it seems he might be willing to take it seriously. He does see abnormalities in the c1-2 area, but feels the risk of surgery out weighs the benefits fearing damage to the right vertebral artery during surgery. I told him that I would be happy if someone there would just be willing to watch things more closely due to my worry about this artery, the recent swelling in lower right side of my neck near clavical that is still there and getting worse, and the headaches localized to this area. He ended up making an appointment with an orthopedic surgeon/NSG----I'll see him on Sept 30th. I will also see the neuromuscular neurologist again for a two month followup on Sept. 14th. It's time the medical community takes the responsibility of realizing how serious EDS is. Maxine :0)

Thank you----------------She has two daughters, and I have been on the phone with them, and I also talked with her mother today. As it turns out her aorta was thinnning, but this couldn't be seen on the cardiac echo. I don't want to scare anyone, just keep them informed. I think maybe an MRA of this area might serve well to check more closely. She had lumbar spine surgery this Monday, and came through the surgery fine. The EDS had affected her spine so badly that they moved her up on the waiting list. She had surgery in Cincinnati with a spine surgeon familiar with EDS complications. Her BPs started to drop lower then her usual after the surgery, and knowing of her EDS vascular surgeons were called in, so I'm assuming they tried to repair the aorta, but sadly after working on her until 4:30 the next morning, she didn't make it. She had been having wild swings on BP, and her pulse pressures were very narrow. She went to the ER several times, but was dismissed as having "anxiety". I suggested she see Dr. Grubb because of the serious nature of her BP swings, and ask to at least be put on a beta blocker to lower the high BP swings if they found this appropriate. This was definately not her normal, and I was very concerned-----------she needed to be taken seriously. One of her ER docs finally called Dr. Grubb's office and got her in sooner. She saw Dr. Grubb last Monday, and that's all I know of before I heard she passed away. I don't know if Dr. Grubb prescribed the beta blocker, or another doc----- but she was put on a low dose. I took her to the appt with Dr. Grubb because she couldn't drive. He was running behind, so she came to my house for a couple of hours. I live very close obviously. One doctor I can see that isn't out of town. I'm glad we had this time together last Monday--------I had no idea I would never see her again They depleted the blood supply at the hospital trying to save her. Another one of her docs here locally blew her off as well. Very narrow pulse pressures can be a warning that something is wrong with the aorta. I will be going to the funeral home Sunday to see her, and the funeral is Monday. Maxine :0)

This is so important---have your aorta checked regularly if you have ANY type of EDS-----even if your doc has said benign hyper mobility-----get it checked anyway. Today I received very bad news. My friend's daughter called and said her mother died from aortic complications after a surgical procedure on her lower spine. She had been suffering from wild swings in blood pressure for weeks, and in and out of different ERs. Vascular complications can happen with all types of EDS. Please keep her family in your thoughts and prayers. Her daughters have lost both thier parents now. Their father died of a tragic car accident just over a year ago. Maxine :0)

Yes, MSG can definately aggravate our symptoms. MSG is a flavor enhancer, and in my personal opinion it should not be added to any food product. MSG makes me very sick, and I feel so shaky with tachycardia, tremors, bloat, ect. I honestly want to climb out of my own skin if I eat anything with MSG. I always make sure foods don't have msg before I buy them, and ask at restaurants when I go. Maxine :0)

WELCOME Jenny! Has your doctor mentioned NCS (neurocardiogenic syncope)? If you heart rate doesn't go into tachycardia to compensite for the standing position when you BP gets low you can feel really bad and pass out. Not all POTS patients passout, and having the higher heart rates help compensate for the low BP preventing this. I don't know if I'm making any sense right now because I'm having a bad day with really low BPs, and my thinking isn't really clear right now. I just decided to take it while typing this because I feel so wiped out. It was 98/68 sitting----------reart rate 68bpm. Standing my BP went down to 88/68-----heart rate of 81, then fell to 83/58-----heart rate also fell to 73bpm. I continued to take it one more time and BP went back up to 88/70------pulse went back up to 81. My PCP has mentioned NCS since my heart rate doesn't seem to compensate like it used to. I might have both POTS and NCS. A TT test should be done in conjunction with others tests, as they can measure you Blood Pressure and heart rate throughout the test. The test can stress a normal body, but the doctor can also see the BP and HR readings to make a judgement on weather this is a false positive. The TT is only part of the testing for autonomic nervous system dysfunction. Here's a list from one of the links from this website on how POTS is detected; http://www.dinet.org/how_is_pots_detected.htm Hang in there, and I hope you get the correct diagnosis soon, so you can get the appropriate treatment. Take Care, Maxine :0)

Julie, I'm sorry that your dealing with headaches again, I know how those can keep us even more limited then we already are. Migraines have never been an issue for me thankfully, but I do get some severe occipital headaches that feel like they're going to make me pass out. Can you ask about another MRI to look at those cysts again? I wish doctors wouldn't blow those off so much. I now other people who have those, and it seems like they're not taken all that seriously. I know they can cause some problems. http://www.nervous-system-diseases.com/pineal-cyst.html Pituitary cyst; http://www.healthsystem.virginia.edu/inter...pituitaryqa.cfm I hope your doctor will look into this a little more expediently. HUGS, Maxine :0)

Hi Shoe, Yes, please be careful with too much water. It sounds like you might benefit from increasing your sodium. I have autoimmune hashemoto's thyroid, and yes autoimmune disorders can add a monkey wrench to ANS dysfunction. I hope your GP works out well for you. It's so important for out doctors to try to understand this if they want to amange out health care right. Take care of yourself. HUGS, Maxine :0)

Hello shankeshoes, I really respect the fact that you support your wife, and advocate for her. My husband would love to have someone to relate with on having a spouse with chronic illness. I know there's times he gets pretty stressed, but doesn't really have anyone to talk with regarding this illness. We used to have a local support group, and my husband was very supportive of that. We have have our own horror stories also. It's so shocking what having a chronic invisible illness will do to us, and how cruel people can be who don't understand--------------------that means medical professionals too. We've had very bad experiences, and we have have some good expereinces too. If you would like to e-mail my husband, please feel free to PM me for his e-mail address. We hare a bit older----I just turned 50 in May, and my husband will be 46 in Dec. We have been down this road for almost 10 years, and as you can see by my signature line, it's been a busy 10 years. Maxine :0)

I think tachycardia can make someone pass out. If the heart rate is too fast it can not pump blood efficiently-------thus causing syncope if it gets high enough. It sounds like this doctor has his own therories, and they sound a little odd to me. Sometimes I get a little anxious and hold my breath. This is usually when I get the adrenaline rushes from the POTS. A simple thing I did was remember to breathe in an out in a normal rhythm-----------------nothing fancy. I try to think of it as a child breathing in thier sleep. This helps me a lot. I would think breathing as this doctor suggests would cause lack of oxygen and cause more problems. I'm glad your feeling better, but this doctor sounds like he's a little misguided in his thoughts on this. As far as being deconditioned goes, my CRASH came when I was very active in my life. I was by no means in tip top shape becuase I was very busy, so I exercised when I could that last year before the crash. However, most of my life I was always exercising doing something. POTS comes first, then some of us become deconditioned due to limitations. It's best to move as much as possible when we have the opportunity, but I don't buy his views on being deconditioned, and this being the cause of blood pooling and tachycardia. Maxine :0)

Congratulations! Even with an attorney you need to follow up to make sure they are obtaining every medical record that pertains to your case. I'm so happy for you, but I understand it's also sobering to hear your officially disabled. Now you can breathe a little easier with some extra your income coming in. It's not really extra though, as most of us need it, as I'm sure you do with four kids. For me it was only part of what I earned previously, but I'm grateful to have it. Maxine :0)

Erika, I have no words of wisdom, but wanted to send you a (((((((hug)))))))) anyway. Try to find something to distract you, something fun. Watch a comedy, something to make you laugh or feel good. Maybe take some extra time in bed in the morning and just lay there listing to the birds chirp. I love listening to the mourning doves sing. I live in NW Ohio, and I don't know if you have mourning doves, but listening to the birds sing is very comforting. Sometimes when I take extra time laying awake in bed in the morning it gives me time to sort though things--------------------organize my mind----lol. HUGS to you again. Maxine :0)

I'm sorry you had to deal with that, I know how those feel, and fortunately the really bad spells like that are few and far between for me. However, when they happen they do smoke you out, and leave you in bed for a while. I hope this passes for you quickly. It might be hormones, or it could be vessels dilating more due to your pregnancy. It's difficult because you need to load up on salt when your blood pressure gets too low, but with pregnancy you have to make sure it doesn't get too high also. Does your OBGYN know much about dysautonomia? He needs to work together with your ANS/POTS doc to keep you more comfortable during your pregnancy. It needs to be all about you and the baby right now. I can't go into a movie theatre without getting overstimulated from the loud speakers, and all the loud movie adds-----------I feel like it's going to blow me out of my chair. Take care of yourself. HUGS, Maxine :0)

Oh, I also wanted to add that they do have a sitting CINE MRI. I asked him if they had an MRI to see what we look like with gravity, since laying flat on a table with your head locked in one position doesn't seem an accurate test to find instability that happens when a person is in motion using their normal daily body mechanics. Then he told me they do have a sitting MRI, but it was a CINE MRI. Hey, it's better then nothing. Maxine :0)

Thank you--- When I had my chest x-ray it was mentioned that I had mild nodularity mild and interstitial prominance. My PCP ordered a CT scan, and I gave my pulminologist a call. My pulminologist said the CT did show very mild institial disease, and said it hasn't changed in three years. This could be from an aspiration issue, as I know there has been a few times I have choked really bad on liquids and my own saliva. Really, we have no way of knowing, as CCI isn't well understood with EDS as a cause, so it's not investigated any further, or the consequences resulting from it. I often wonder what's a life worth to some of these medical institutions? CCI resulting from anything is worth investigating----even if it's not clear cut on the MRI. If the pannus growth is there, it didn't get there without some kind of friction. This friction would not happen without instability. I don't care if the pannus growth has been stable and not grown more. If I feel horizontal movement, and shifting when I look up, then the pannus growth will continue. I would just appreciate a good reputable medical institution like the CC to be willing to take this seriously and keep a watchful eye on things. If they would just do that, I'd be happy. I told the NSG this, and he seemd to be OK with it. I'm advocating for all of us who deal with this, just as I still do for dysautonomia, and EDS alone. I'm stunned there isn't more known about this since the consequences can be so tragic. The NSG even said I could have problems with my brain arteries, and people with EDS need to be watched for aneurysms. This is precisely why I need regular check ups on the vertebral artery, especially since I have severe sharp pain in that vicinity. Maxine :0)

Thanks Mkoven, Yes I do have problems with swallowing, and often choke on liquids. My Missing gag reflex has been there for a while, and during Christmas---(in fact it was Christmas Day), I had to go to the ER for a throat culture. It was positive for strep. The ER doc noticed the missing gag reflex, and commented that he put a big old swap back there, and was amazed I didn't gag. The same big old swap was used duing my exam at the CC. I hope the next appointment goes well, and this doc isn't too "old school", and is open to information on EDS, and how it relates to spine instability. Maxine :0)

Thanks for your support and replies--- I'm just glad he didn't dismiss me altogether, and didn't kick me out of the room when I asked about a part of the neuro exam where they squeeze the fingers. I asked him why they do that because if no one could squeeze your fingers wouldn't it be too late-----so what's the point with that? I know that they check to see if strength is even on both sides, but everyone has a stonger side then the other. I asked about slurring speeck, and the fact I can't walk one foot in front of the other, along with hyper relexes and no gag reflex, and why this wouldn't warrent further investigation. Come on, this is the Cleveland Clinic. We discussed my case for a bit loner, and he was open minded. He then said we'll have you see another spine specialist who is one to the best there at the Cleveland Clinic. Who knows, hopefully he's open minded and will listen long enough to have more discussion on my "weird case" with some other doctors. Maybe if I still have the strength to continue advocating for myself and others who have this crazy stuff it will bring some kind of attention. Even if it's bad attention by them thinking I'm half out of my mind, maybe at some point some GOOD EARS will hear it and say this seems an odd thing for a woman to try to get attention for-------wouldn't she use something more obvious to get attention? Wouldn't it be easier then trying to use some rare disorder that many physicians haven't heard about? Where would someone get information on this if they haven't already been dealing with this for years? I respect doctors, and all they have to go though to get their MD. Having the MD after their name is a privilege that should be humbling knowing people's lives are in their hands. The swelling on the back of my neck is still there, and also on the right side of my neck near clavical. It's not a good situation, and I don't want attention this way. Maxine :0)

I wanted to update you on my visit at the Cleveland Clinic. I saw Dr. Ajit Krishnaney on the 8th floor spine center. He sees (CCI) "some" cervical cranial instability, but nothing that warrents surgery right now due to the risks. He said there is pannus growth, but also said it could be an artifact of some kind. However other physicians have said this is pannus, even the NSG at the U of M. I told him about the excessive movement, and the recent headaches on the lower cranial area of my head, and spreading to my right temple. At least the Cleveland Clinic has admitted there's some instability I told him I was concerned about the right vertebral artery being enlarged, and the combination of poor vascular tone from the EDS, and the instability in the same area. He said the benefits from surgery were outweighed by the risk of injuring the vertebral artery. He was respectful, and listened to me as I explained the EDS connection to CCI. I was pretty amazed, because were were able to agree to disagree, and he was still willing to listen to my frustrations in regards to the lack of understanding in the bigger health institutions on CCI related to EDS. An EMG was done on my right arm, and according to Dr. Krishnaney it was normal for the most part. I didn't see the results, he read them off the computer. They did a neurological exam, and my gag reflex is missing. There was no mention of other areas of my spine that also have problems. The desiccated disk on t8-9 causes a lot of problems, and bone crushing pain if I stand or use simple body mechanics too long. I have had deep strain on my inner tendons of ligaments on the left side of my neck due to overuse from spine being so weak. This is from weak muscle tone also. I obviously can't exercise my neck muscles. the headaches continue, and they are disturbing in that they are sharp and intense, and sometimes come when turning my head to the right. Dr. Krishnaney did not agree with most of the things diagnosed, but said he could be wrong, and said he would refer me to Dr. Gordon Bell. http://my.clevelandclinic.org/staff_direct.../Staff_701.aspx It looks like Dr. Bell has extensive knowledge of the spine, but I'm betting he will not know the effects of EDS on the spine. The mechanics are different, as EDS causes excessive movement from LOOSE joints verses rheumatoid arthritis causing limited movement from STIFF joints. However, the end result is the same-------damaged joints and ligaments which cause stress on the spine. HOWEVER, it seems EDS can accelerate the spinal stress and damage due to the excessive movement. I can hear the excessive movement, and FEEL it. This is much different then cracking joints, this is movement that is not natural. Subluxating is just plain scary in the cervical/cranial area. The doctor didn't seem to believe I'm having a subluxating problem, and said I must be feeling something else. As I said previously in other e-mails, my main concern is the vertebral artery, and the type of headaches I'm having. These are not my usual occipital headaches from the CCI, there's the added dagger/ice pick shooting pain from the base of my cranium on the right. Have you had any experiences with the Cleveland Clinic about EDS? Have you had any discussion on EDS and the relationship of spine instability with any doctors? I tried to explain as much as I know, but I'm not a doctor, and my knowledge is very limited compared to a geneticist specializing in EDS, and any information I share will probably be dismissed and not respected. Many patients with this get worn down physically, and it's very difficult for them to continue advocating for themselves. I will keep you updated on any other information on the Cleveland Clinic physicians. I still have another appt. follow up with neuromuscular doctor on Sept. 14th. I'm not sure when I'll see dr. Bell, as they have to see what his schedule looks like. I didn't list all my symptoms, as I didn't want o make this longer then it already is. I'm in so much pain right now, and the vertebrae just below my neck is pulling to the right and is swelled up. During the EMG they also inserted a needle on the right side of my neck. Maxine :0)

Mkoven, Thanks for your thoughtful reply. My expectations aren't high, but I would like them to give me some kind of insight on this vertebral artery. I want to find out if this situation is emergent. Dr. Durrani who is an orthopedic spine surgeon said my vertebral artery is being kinked, and that this a dangerous way to walk around. The trouble is that this right vertebral artery is already enlarged, and it's pressing on the brain stem per Dr. Heffez in Milwaukee in 2002. At the time he worked in Chicago. As you might know, the left vertebral artery is missing, so this is why the right one is enlarged. I'd hate for this thing to blow from the combination of instability, poor vascular tone, and the artery being enlarged already. I would think that smeone there has some commn sense and can offer some kind of advise on this. Surgery is something I want to avoid, but I want more opinions, as I have the other complication with the vertebral artery. The problem is that if they don't believe EDS can cause CCI, then they may not be concerned about the enlarged artery. There's a lot of liability there-------and quite a challange for any surgeon when dealing with arterial issues. that's why I'm going to the cleveland clinic hoping that they will at the very least listen to this combo and keep an open mind. I'm going in with the credentials of Dr. Tinkle (EDS geneticist), Dr. Nazli McDonnell, (Heading the EDs study at NIH--also a geneticist), and Dr. Durrani (orthopedic surgeon who has experience in CCI). All of them have great credentials, and NOT connected with TCI. Although I do have records from TCI, I don't mention the docs when I'm at appts. I also have this swelling on the right side of my neck near my clavical-----and this is something visual they can see---- I understand not wanting surgery, and the cascade effect it can have on an EDS spine. I'm an example of that. I didn't have this instability until 6 months after my cervical spine fusion on c5, 6, and 7 along with a titanium plate. It has gotten worse though the years, and my WHOLE spine is affected. When I wore my hard cervical collar, I was working my thoracic spine too much. Dr. Durrani told me I also had a desiccated disc on T-8-9. Then when I went to NIH Dr. McDonnell told me my whole thoracic spine is desiccated. Believe me, it feels that way---------------sometimes it feels like it's caving ing, and it hurts all the way through to me chest. It's so bad sometimes it stuns me how I manage some days. It truly feels like something is pretty bad, and it might kill me right then. The pain is so sharp and intense, and when it hurts like this in the back of my head it's pretty scary. I have a lot of excessive movement back there. I'm a pretty good advocate for myself, and I can throw out a pretty good argument on this with most docs. I used to be more of an advocate for other patients, but I have found I would be too tired and worn down to do it for myself. Now I feel like I'm doing for the good of all people who have EDS and CCI. I'm determined to get the Cleveland Clinic to take this on. However, some Docs just have narrow thinking and there's nothing you can do-------------It depends on the size of the EGO. Maxine :0)

Tomorrow I go to the Cleveland Clinic to see a spine specialist and have an EMG. I'm prepared for ignorance----especially related to my CCI (cervical/cranial instability) related to EDS. Docs can't make the connection with EDS, only Injury or rheumatoid arthritis. It is so ridiculous because the end result is the same, only my joint damage is from joints that are too loose, verses stiff joints from rheumatoid arthritis. Unfortunately heads are heavy, and as an added inconvenience my neck has to hold it up. If one has EDS, and it happens to affect this area they are not taken seriously. However, docs that specialize is EDS understand this and pass it on, but they aren't taken seriously either----other then a handful of NSGs or a couple orthopedic surgeons. The NSG I'm seeing has a good bio, and I hope he's willing to at the very least listen to me. The neuromuscular doc from the CC that I saw last month would like to see me again next month for follow up. I think he's a good doc, but no bedside manner-----JUST BLANK. Maybe he's paying attention to those lesions in my brain, and wondering if that is also causing some problems. The neurologist I see locally was checking me for MS, but the MS specialist she sent me too said I didn't show the signs. It's hard to tell sometimes though, as symtoms of ANS dysfunction can mimic MS. Some EDs patients also develop MS secondary to the EDS, as brain lesions can also be caused from EDS. Myelin has collagen in it too-------------or it's affected by it. Collagen is everywhere in our body. My neck has gotten so bad that I'm pulling muscles and deep tendons on my neck. My mid spine has issues also, and now I'm feeling the discomfort more in my lower back. It's an annoying kind of pain, and my hips are affected too. I guess I hurt all over, as my joints and ligaments are failing me due to the EDS, but the most important right now is the CCI, other spine instability and desiccation. I'm praying and keeping my fingers crossed that I can get some headway on some of this. Still waitng for insurance approval to be admitted for the virtual colonoscopy prep. As you remember, last year I had a barium enema with double contrast which is a pretty good screening test, but when I went to NIH, Dr. McDonnell wanted me to have a colonoscopy to take a closer look at the multiple diverticuli in large bowel which seem excessive since 3/4 of bowel is covered. My BP has been really low and unstable, so PCP decided against me doing the prep for colonoscopy and ordered this as in patient. Of coursse he cancelled the reg. colonoscopy due to the instability of spine, and didn't want me to be sedated and not able to control my body mechanics during the test. So many obstacles to overcome. Maxine :0)

Another thing I wanted to add was that I would get tachycardia when I drank alcohol. In the younger years I could handle a fair amount of beer---(I like good imported beer, but drank mostly michelob beer. Now that I can barely handle a half of beer I have good imports, beer my son and his father in law make, or my brother in law makes. Once I was out with a guy, and we were laying together on the couch watching TV, and he said my heart was beating SO FAST! He said, "how can you stand it"! I told him I was used to it, but I really wasn't. It was just easier to deal with when I was more relaxed from the alcohol buzz. If I got tachy otherwise it scared the you know what out of me. Alcohol also dehydrates you, and this will make POTS worse. I remember drinking copious amounts of water, juice, or whatever I could get my hands on the day after drinking any kind of alcohol. I'm assuming my blood vessels dilated more, as alcohol is a vasodilator. I didn't have the tachycardia spells consistantly until 1990. I had a few months of these spells in late 1981 soon after my son was born-----and back then they said I had MVP. YEars later they said I don't have MVP. In late 2000 I had the BIG CRASH, and have since spiraled into what you see below in my signature line. I don't remember craving salt back then. A weird thing I remember is craving BLTs all the time. I rarely eat them now becaue bacon is so bad for you. Now that I have salted my food more due to the POTS, I have grown accustomed to the taste, and miss it on many foods if it's not available at family picnics, parties, ect. Maxine :0)

Ahhhh, yes----------------------always had the crossed legs when sitting, or legs tucked up under me. Stores with fertilizer bother me, and home depot and lowes sometimes have it near the front door, and they also have some other chemical smells at times. I was never one to deal with heat all that well, but certainly did better with it when I was younger, as I didn't have blood pooling back then that I know of. I'm guessing vascular tone has gotten much worse, and I don't tolerate a hot day for more then a few minutes before I feel like collapsing. Maxine :0)