Maxine

Thanks for replying girls------------ My fever finally broke yesterday I think---I haven't checked it today. I had an extremely stiff spine/neck---more then my usual. I have a lot of upper spine and neck instability/problems ect. But it was terrible the last few days, and I'm still being very careful because I'm so weak. Yesterday I felt a little better, and my son was over with his girlfriend and her little daughter. We had a nice visit for a couple hours, but it wore me out completely. I must have some kind of virus going around-------my ears are full, and my sinuses are full----although I'm having a tough time getting them to open when I blow my nose. When they do it's only a little at a time. There is blood mixed with the mucus-------sorry---I know it's nasty........... The second night I had this it was so bad the tylenol would not break my fever. Every joint in my body hurt so bad---my right knee cap felt like it was being stuck with thick needles. My joints still ache---but not as bad, and I'm still weak, but slowly getting better. I'm staying low. My appetite is very bad----I'm not eating much........... Next week I go to Cincinnatti to an EDS specialist---so I hope I am over this by then. I did get some gatoraid-------------and have been pushing the fluids. Notherndarline, my PCP doesn't take me very seriously----and if I did see her she would push antibiotics. I get very sick from antibiotics---so I don't take them unless it's very serious. I have shown slow improvement, so I'm avoiding the PCP for now. If I don't get better---I will see her to get this treated. I have to admit, I was a little scared-----------this is a whopper of a virus, but so far it has not moved into my chest/lungs. I just can't get oover how much worse this is making my spine hurt--------it's been on fire. Rest---rest rest---that's all I'm doing. I think last night this stuff tried to move into my chest---maybe not-----my throat was doing something---It's hard to remember---I was in and out of sleep----I was coughing, but it was more like I was choking----and very dry. It will be interesting to see what the sleep study shows. Maxine :0)

I don't know where the heck I got this weird virus---it that is what it is. It is very unusual for me to get a fever---and tonight I'm spiking at 100.3----high for me. My spine feels like it's on fire, and every joint in my body aches. All I can do is sit here and think nightmarish thoughts of having to go to ER---and them not being able to help me---and my heart rate goes out of control. I have no idea where i picked this up----other then it might be from my son---but I assumed I gave him my cold...... I had a cold, and it was kind of bad for a couple days, but I don't think I have much of a fever---I don't know I never took it---then the cold cleared up in three more days. Now I have this weird stuff. Started with a scratchy throat----and now everything hurts like you know what---and I'm tachy even on the beta blockers---about 100 bpm-----even after I took my klonopin. The only other thing different this week was the sleep study, and the bed seemed smelly, but they said the sheets are changed every day. I feel so terrible............ Tylenol has not cleared it--------still 100.5------------------Sorry---not one to handle illness on top of the junk I already have going on.............. Maxine

Thank You NorthernDarlene, I went to one of the physicians at the MUO neurology center and was completely dismissed of everything---can't say his name on here---but he is in with that group. However, I did hear Dr. Tietjen is nice---so maybe a possibility. I hope I'm taken seriously---I can't take much more of this--------------- Maxine :0)

Thanks for the support and advice------------ Today I got back from my sleep study----I finally slept for it thankfully, but I don't think for more then 5 hours---I can't remember. Then today I had to have the nap study------boring............. I'm not sure why I'm having this study------When I tried the first one they said I had loss of oxygen in light sleep, so I should complete the study. As far as my cholesterol issues-----I have increased omega 3 fats, but will need to do it on a bigger scale, and introduce something else to help, just don't know what right now. lThomas, that article was interesting on Policosanol------something I can check out. I'm just so sensitive to everything I put into my body. I'm convinced there is something else in the vitamin D that was ordered by prescription---I just didn't react to it well. Whatever they binded it with-----------not sure, but I know I have to do something----my levels are less then 7..... Hopefully my PCP will get the referral to the neurology office I called. I'm not overly concerned, but I do think the periventricular white matter lesions need to be looked at. This part of the brain is a favorite hangout for MS...... It's very hard to tell as I have so many of the symptoms, but POTS also has simular symptoms. Today while taking my shower after the sleep study my legs turned dark purple, and the veins in my feet were so loaded they looked black. All of this is so overwhelming to me..... Then we have the stalking incident with the nurse........... Some days I muddle through, and some days i'm depressed beyond words---I guess on the days I muddle through, I'm functionally depressed. I guess where I felt I was safe---I don't feel safe anymore......... I just don't understand some folks-----------how they find entertainment in doing that to people. No life I guess............ Thanks again--------------------> Maxine :0)

Hi, I just needed a few opinions----or possibly a little insight on this. My POTS symptoms have been progressive, but in a different manner then usual. In the early winter of 2005, and 2006 I had another hyper-adrengic spell, or at least it felt that way. Then after the hyper-adrengic feelings wore down from a little help from klonopin---(very tiny doses---1/4 of .50 on average), I noticed I crashed with severe fatigue---worse then my usual. And while I had some break through tachycardia for a while----when I crashed my heart rate was more at a fixed rate in the 70s mostly. My BPs have been running very low. I was mis-diagnosed with hyper-adrengic POTS for a few months-(no testing was done to prove this---so I requested catecholamines to be tested-----in the normal range, but triple the dopamine levels, I have good old fashioned regular POTS---ANS dysfunction. Meanwhile, I'm trying to figure out all my other junk---all my upper spine issues/instability, chiari--(if that is truly what it is---small posterior fossa with a retroflexed odontoid bone----which some NSGs say I have this, but some say I don't), congenital cervical spine stenosis---disk disease, cervical/cranial instability---and finally the EDS. It' sounds a mess, but I have seen people with a lot more going on. It's just confusing trying to figure out which Doc is right, which adds more stress to the mix. While this is going on I had another MRI to see where I'm at. This time the radiologist did not mention all the other issues at all----(although at least three radiologists have differt reports about all the other issues I listed above). So weird. Anyway, he did specify that I need to see a neurologist----(correlate clinically) due to s few tiny non-specific periventricular white matter lesions. He said these could represent sequela of chronic small vessel ischemic disease----and he also said he could not rule out a demyelinating process based on this appearance. I don't know how long I've been telling Docs that I have chronic low HDL cholesterol. My LDL has been just in the acceptable range of borderline, and my triclycerides are high---but just in the last couple years. I cut back on a refined sugars and it helped that out a bit. My LDL is 126---HDL is only 27---- , and triclycerides were 205----down from 260. I could not tolerate statins. The one PCP said keep going with my diet, and we will check again----it's now about time to check again. I have had some weight loss, and stuck to my diet fairly well-----a little chocolate once in a while----not much at all. Other sugars----I did very well---hence a few pounds were lost. I'm concerned about my chronic problems with low HDL that has plagued me for years----even when I weighed 119 pounds. I have always followed a very low fat diet----one doc said I didn't get enough good fat in my diet. Chronic low HDL can occur in people on very low fat diets. But refined surgars raise the triclycerides----even a small amount. These lesions are very common with MS----very typical to have lesions in the periventriculat area. I also have them on frontal lobes from past MRIs. My problem is that I have so much going on with my spine, and also have myelopathy diagnosed in 2005----I'm not sure what is causing what. All I know is that in the last few weeks I have increased headaches in the back of my head----and my fatigue has not really recovered much. I think I crashed hard in the winter----but in the summer showed some slight improvement---unless I went out in the heat. If I was exposed to heat I had a rapid increase in symptoms. I feel completely burned out on all this----and my nerves are completely rattled. I called my brother today to see who he would recommend from The Toledo Clinic. He handles their computer support----it's a huge clinic -----three huge buildings---and an out patient center. He told me about a group of neurologists. Monday I have sleep study, and I'll set up an appointment with the neurologist the same day. This may turn out to be nothing-----but from what I read it should be checked out...... The reason I posted some of my history here is because when I was reading about the lesions it mentioned issues with high cholesterol----but it also said with these types of lesions there is usually more involved then a lipid problem in younger people---and more common to see a demyelation process---and it even mentions retroflex odontoid process---(pressure on the brain stem)---so I thought it might make a little sense to post what has been going on with me the last couple years. Anyone know anything---or heard anything about this? Maxine :0)

Marnian, The only thing I can think of is that he may want you to try solid foods again so you don't lose the digestion abilities of your stomach completely. Easy for him to say when your vomiting---nausea ect. He could have put things a different way though-----he didn't sound very sensitive. When I had trouble in the beginning of my POTS I had a terrible time----eating a saltine cracker sent my stomach into painful knots. I lost 25 pounds in 5 weeks.......... However, during this time I forced myself to eat tiny amounts of food-----cereal helped me---cheerios. Cereal is fortified with vitamins, and it forced my stomach to work. It took a considerable amount of time, and my guts aren't perfect, and still get very constipated, but my stomach motility is OK. I also didn't have the vomiting problems---so it made things easier. I'm fortunate as I don't think I had true gastropareses--(spelling?)----possibly temporary at the time. My concern sometimes is that some folks with this are over medicated. The pump inhibitors concern me the most as they are shutting down the stomach's natural acids which aid the digestion process--(motility). But it's a catch 22-----as the acid builds up in the tummy from the slow digestion, and it backs up into the esophagus causing damage. Pump inhibitors were prescribed for me---protonix---and prevacid. I took prevacid, but it made me feel worse. I never took the protonix. Depending how bad the gastric reflux---it may be possible to take over the counter antacids only when needed. The pump inhibitors may be great for people who don't have slow gastric motility, but have chronic acid reflux. I'm guessing the gastric reflux for people with slow motility is secondary. It's a tough call, as you can't walk around in misery. They also found inflammation in my esophagus in 2001 with an endoscopy. I assume it was temporary because my motility is fine per the gastric emptying test I had a year and a half ago. Your Doc may have a point, but he sounds like he's being a jerk about it. Maybe you could try tiny amounts of food---like starting with a tablespoon at a time, and work your way up. Try easily digestable foods----canned fruits in light syrup, apple sause, canned vegetables, soups---then introduce more low fat foods as you go. It's important to get some protein-----low fat though---maybe white meat chicken ect. They told me I had acid reflux, but my gut feeling was that I was sick with something else--(not yet diagnosed with POTS), so I figured it was secondary to whatever was going on with my body. Also, Ensure actually made me feel sick----I didn't digest it well at the time. I doubt I had "true" acid reflux, as I would not tolerate all the v-8 juice, orange juice, and tomato sauces I eat today. I only notice acid backing up my esophgus when I am very back up from not being able to go to the bathroom for more then 4 days. then I either take something, slow down my solid food intake, or both until the problem clears. There is a lot of people that have ANS neuropathy, and it affects the motility---and it really stinks-----because they are always in a catch 22 position. After all---they need to live as comfortable as possible, and that usually requires the aid of drug therapy. I hope you find something that works well for you............. Maxine :0)

I think it's a great Idea-----------I think the public----medical professionals need a little more shock and awe on the realities of this disorder and how it can affects our lives. I still think some educational facets still need to be included, but perhaps in our own experiences----and of course our triumphs----accomplishments despite all this. Our stories about overcoming some of the terrible times that can come with this can inspire other folks who have just discovered they have dysautonomia. There are different levels of this illness---some very severe, and some more mild, but even the folks with milder ANS dysfunction have to alter their lives in one form or another. I also think it's a good idea to have a photo on the front cover of a little booklet that shows all the different types of people that get this disease----people of all different shapes and sizes----and all the ethnic groups affected. There's a certain amount of ignorance out there on the type of person that gets dysautonomia. This would be a opportunity to help eachother overcome the struggles---and at the same time show that even though we all have a lot of the same struggles and symptoms---we are still all different......... Let me know if I can be of any help................. Maxine

I hope you feel better------hormones could be it----your temperature can fluctuate a little also with hormones changes. I'm sorry you had to deal with that---it's so scary to wake up that way---I had it happen to me also. I did the same thing---extra beta blocker. I always thought I could never have tachycardia as long as I took my BB, then when I did is scared the you know what out of me. I've been on BBs for 16 years now, but didn't have break through tachycardia until Dec. of 2000. When I was diagnosed with POTS---at least I knew why this happened, but it still scares me when it happens. I handle it better now, but I do notice things get worse around my cycle, stress---and especially a virus. I notice a lot of folks on here get more tachy when there is some kind of outside stress in addition to their POTS. Sending a BIG HUG-----and sending positive thoughts/prayers to keep those spells away from you........ Maxine :0) Sending a little get well flower-----

I know I kind of carried on about the environmental issues----related to Gulf war---and not related---but, I think that is another area where some medical professionals have not correlated with ANS dysfunction. On the links I posted---I noticed some of them mentioned ANS issues---tachycardia/palpitations and other neurological illness dating back to the 1st world war. Please forgive---as I trailed off a bit-------------- Maxine :0)

Thank you Steph for the interesting articles----I will read them when I'm having a more energized day---lately the fatigue is terrible---fighting a virus too......... That is so nice of you to look all of that up for us------ I have been on this forum from the beginning, but had to change my user name-------------- There is always the possibility of Toxins in WAR also---(in addition to PTSD ect.)---- -----here's some links on Gulf war.... http://www.psrla.org/program_military_toxins.htm http://www.gulfweb.org/bigdoc/hsr105-388.cfm http://www.penfield-gill.com/presentations/CDCall-final.htm http://www.sfgate.com/cgi-bin/article.cgi?...;type=printable http://www.a652ada.com/gws.html Here's another good link---mentions OI--low blood pressure---tachycardia http://home.att.net/~potsweb/gulfwar.html Anyway---I have always wondered on the environmental factors in ANS dysfunction. Now I know for some it's genetic, viral, secondary to something else------but over the last 5 years or so I can't seem to get this OHIO thing out of my mind-------so many OHIO folks sick with ANS dysfunction. I was exposed to some terrible toxins at my employer because they were too cheap to improve the ventilation system-------so fumes came into the front office----------so noxious it was unbelievable. That is when I had my first real ANS crash----but I didn't know it at the time---not familar with POTS.dysautonomia, so it was chalked up to my MVP acting up. When they were busted and fined by the EPA---the toxic fumes went away. They had to alter the processing of the soiled shop towels with ink solvents and ink toxins. Of course there was PERK---for dry cleaning, fuel oil pumped into the ground weekly ect. And at one point heavy levels of lead was found in my urine, but it was never properly investigated. When they ran blood work it was not found---but the blood life for lead is only 35 days----then the kidneys is the next stop. Then you have pesticides sprayed----even in neighborhoods for Mosquitos------Ohio has a lot of farming, and so does Michigan, Penn, Ill. I have read some of the articles on Gulf war syndrome----and the "soldiers heart syndrome" in the past-----I definately think environmental causes need to be further investigated. I don't know what it is----but when environmental causes for illness get brought up-------people get tight lipped----professionals...... BIG CAN OF WORMS-------------THAT ONE......... Maxine :0)

I had those symptoms before when I wake up suddenly---I'm usually coughing---gasping for air. I went for a sleep study, but couldn't sleep both times---and I don't normally have a chronic sleep problem. I do wake up a couple times a night---rarely sleep 8 hours straight through. I will be going for another sleep study on the 18th of this month. This time I'll take klonopin with me----a tiny amount can knock me out. They noticed some oxygen loss in light sleep---but since I never got into deep sleep the studies were incomplete. This is something you should have evaluated further to rule out any serious problems. I wouldn't worry too much---just make sure you get it checked out. Some people with ANS dysfunction have sleep apnea---or other sleep disturbances. Maxine :0)

Morgan, I hope you find relief soon------and I hope your nausea passes very quickly. It looks like you finally have a doctor who is taking things seriously------about time----considering your HR was in the 30s. Rest well.... HUGS, Maxine

Good for you Nina----I don't know how you do it-------------- Julie :0)

OLL-----here's a couple links I found......I think they are the same study........... http://www.medscape.com/medline/abstract/11483831 http://www.celiac.com/st_prod.html?p_prodi...-02106231005.69 Here's a link on vitamin D deficiency----------> http://www.rense.com/general48/sunlight1.htm Maxine :0)

Sorry OLL ------------I didn't read it clearly----can you find the link---I would be interested to read it. In the mean time---I'll try to find it myself also. Maxine :0)

Hi---thanks for the replies. I don't notice any issues with glutin---other then heavy starchy foods---mashed potatos---potatos in general........make me symptomatic. I get symtomatic just from eating---I think from blood pooling.... However, I do have very low vitamin D-levels----but never heard of a connection with lesions on the brain---interesting----I'll have to check it out. I was prescribed vitamin D---but they wanted to give me a once a month pill-----I won't do that because if I don't tolerate a high dose well---then I have to wait a month to get it out of my system. I'm just taking a multi vitamin with vitamin D---------nad trying to get more sun on cooler day. The Doc said 10 minues on arms and legs is all I need. At any rate---i'm sure if the NSG thinks I have a more serious problem relating to the lesions---they will let me know that I need further testing. I have been so symptomatic lately-----mostly severe fatigue. I did have about one week when I felt fairly good---I don't know what that was all about, but I would like that to happen more often----- Maxine :0)

Thanks for your support and HUGS--------- The lesions are in the periventricular while matter------saying it could represent sequela of chronic small vessel ischemic disease in the appropriate clinical setting-----------or it could be a demyelinating process. It's hard to tell---as I have the spinal issues---I had one NSG say my congenital cervical spine stenosis is very serious and I need a laminectomy--------and he also said I may need decompression for the chiari-0---due to the other areas of compression of brain stem---the retroflex odontoid---(the bone in front of C-2 is tilted forward---anteriorly pressing on brainstem), and the prominant vertebral artery. And of course I have the cervical/cranial instability. The one thing I know for sure myself is the instability because I can literally feel it. It's hard to tell where the pain is coming from---it's all in the neck/upper back/clavical/shoulders----and back of my head---I'm not sure EDS can cause all that, but I have also noticed my knees are starting to get problems. Basically I hurt all over---even my lower back---but I feel the worst of the pain in my trunk. The other spine issues---- two surgeons have differing opinions on where I need surgery----laminectomy of cervical spine---(or possible decompression---and a definate cervical/cranial fusion.) A couple of NSGs closer to where I live said my spine issues were not serious, but did agree that I have problems---however, they are not experienced in these areas as much as the other two NSGs who know about chiari related issues, EDS---and POTS--ANS dysfunction. A new symptom I have noticed is I feel nauseated in the evening---which I never really had much of before. I always have a belly ache from the slow bowel motility---but I was rarely nauseated---quesy. I have also noticed my fingers hyper-extending---and locking up. I have been dropping things----like I can't feel I'm holding them---I don't know, can't figure that one out because I can still open a jar, but have noticed my strength isn't the same. The major wekness is in legs, and pushing/pulling things--like opening a door in a department store ect. I will also be seeing an EDS specialist on Oct. 4th in Cincinatti. THANKS FOR THE WELCOME JOY-------------- Maxine :0)

Willows, I'm sorry your at such a brick wall these days. This illness can be so overwhelming----this and that going wrong--------and all the information being so over the doctor's heads. On a positive note, it's good to hear your Doc wants to learn from your fellow POTS peers------------that's is really great. You have a lot going on---but it sounds like your getting a good plan of action going. I'm so fortunate to live very close to Dr. Grubb's office---less then a mile. But I do know what it's like to travel to see other doctors----for my other conditions. Don't worry about venting---or expressing your frustrations---or crying----I cry a lot---and feel better when I do. It's when I'm numb---and can't cry that scares me. Crying is natural---it's your bodies way of releasing stress---and grief. This stuff is hard to deal with---and after a while all this wacky stuff that happens to our body gets real old at times were bound to crack. You'll get through this..........I'm pulling for you.... Maxine :0)

Hi ----- I have recently been having some pretty serious set backs with my spinal/chiari issues---which in turn has made my POTS symptoms worse. Very weak and more fatigue---pain ect. So I had MRIs done to see what has changed. Of course the radiologist doesn't know much about this---so basically question marks in those areas. However, he noted leasions consistant with some type of TIAs----Ischemic of small vessel disease----or a demylation process----(possible MS---or something else). Said I should have clinical followup. I sent my MRIs to a surgeon---and they will let me know if it's anything to worry about for sure. I know if lesions showed up without contrast---they will definately want to run more tests to check this out further. I'm having a very difficult time just sitting up straight---or just sitting up at all. So wiped out----and OI is worse---low blood pressure---ect.......... I also have EDS---and I'm told with EDS there is a lot of pain, and I can't tell if the pain is from my spinal issues or the EDS----but I feel very unstable in the cervical/cranial junction as usual. I'm signed up under a new name on here---and if you want to know who I was before---please send me a PM----and I will e-mail you from my new e-mail address. Unfortunately I was stalked out on this web page and maybe another---and information was shared...........soooooooooooo now have lost touch, and also been under a lot of stress---and stress is one thing I don't need on top of the stress I already have. Some of you may already know me---based on my postings. I haven't noticed very many responses to my posts---so I'm not sure what is going on. A hint---I've been on here almost since this website began---and I've been a patient advocate and supporter for over 5 years------I still continue to try and educate medical professionals on dysautonomia-----do my best anyway.............. This is sort of a new beginning for me, but unfortunately I feel like a part of me is missing--------devastating what a stalker can do. I chose to come back here---as I need support ----and want to offer my support right along with the rest of you. Take Care, Maxine :0) At this point I watch very carefully what I post

I like the one about medical students borrowing your notes--------------

Thanks for the replies girls---------- Too bad we are so oversensitive to noise----------MRI's are no fun with this. I was used to having MRIs---as I have had several, but the last couple of times it was just nerve wracking. I don't have much of a choice lately---my brain stem symptoms are getting worse, or at least I'm showing the RED Flags of it................ I pray I don't need surgery--------------it's complicated---and my head hurts too much to try and explain it. http://www.asap.org/resources/symptoms.html http://www.chiariinstitute.com/ I'm just wondering how in the world I'll handle the ride to NY on the 21st. I'm having trouble going across town---------my cervical/cranial area is a wobbly mess. The pain is getting so bad it's making me nauseated----getting nauseated is a big deal for me because I rarely get this. I have IBS/constipation and belly aches---gas ect----------but that has usually been it. I need some encouragement-----and prayers.......................... Thanks for reading... Maxine

Oh my goodness-----Another MRI tonight---at 6:00pm------------ One on the brain---and one on my neck. I have had a lot of them done in the past, but The chiari Institute needed another set before I go see them on the 21st. It's been over six months... Anyway I went to a different hospital this time---I liked the MRI machine better---it was open in the back. But there was a lot of vibrating which was constant---outside of the usual pings---pongs---bangs the machine makes while in use. It felt like a fast thumping heart beat that was constant---and I was already over stimulated---------------------------- Otherwise--I'm not claustrophobic, just very overstimulated by the noise. I think the loud rhythmic vibrating did it this time.... It took an entire hour this time---because extra cuts were required. Are any of you bothered by the noise when getting an MRI? I know we get ear plugs---music ect., but you can still hear it. I'm told folks that have chiari, and chiari realted conditions are extremely sensitive to loud noises. I know POTS folks are too---so if you have both conditions----well-------- Tonight I took another half of my beta blocker---and one extra 1/4 of my klonopin----took the edge off, but I still feel my body vibrating. I hope I can get some relief somehow from all this spine/chiari mess----i wish there was a way around surgery........... Maxine

Dizzy Dame, I'm sorry that Johns Hopkins is not helping you. I know what it feels like to be passed around. If they can't figure it out, they want to pass you on to someone else, or they just dismiss you altogether. The TTT is not always conclusive, and other testing should be done along with it. If you feel strongly that you have other health issues in addition to your POTS, then it's worth searching for, but it is exausting also. I also am one of those who have multiple things going on, and still going to other neurologists, neurosurgeons to find out what else is going on. While you may not find out what is causing your POTS---you may find out what else is causing the other symptoms. The only ANS tests I did have was the TTT----and a catecholamine blood test. I had to request the blood test, I was misdiagnosed with hyperadrengic POTS. My catecholamines were normal---except for high dopamine levels---which could help expalin my other CNS symtoms. Thankfully I requested the blood test, or I would have taken the clonodine. That could have been dangerous----considering my BPs were running 70/something on many occasions---. I'm already on a beta blocker to control the tachycardia. I feel your frustration. It must have felt terrible to go to one of the big ones---Johns Hopkins---and then told they can't help you. Cleveland Clinic did that to me. Keep hanging in there---------- Maxine

Sonotech------sending you a BIG HUG---------and prayers for healing soon. I'm sorry you are having to deal with this on top of everything else. Keep us posted on how your doing----------- Maxine

Thanks Sophia, That is nice of you to post for Jan. I admire your strength Jan-------------you and Jeff have been through a lot together, and you both continue to stay strong. I continue to keep you and Jeff in my thoughts and prayers. Keep hanging in there-----and remember to take care of yourself too.......... HUGS, Maxine