hilbiligrl

Thank you so much for sharing that. I read it completely and am excited to add it to my supplements of licorice tablets and my hair skin and nail vitamins.... however, im confused..... do we buy the tumeric or the curcumin, or both?

thanks again

hilbiligrl

I haven't read this book yet, but I saw about it on the dysautonomia forum and plan on reading it asap. I have repeatedly said for years that I personally thought that everything we consume has lots of chemicals in it therefore, lots of poisons in our body that God never intended. Sodas, cakes, cookies, packaged food, processed food, etc.... consumed everyday is consuming lots of chemicals and toxins over and over. I can see how this accumulates in the body and how it can cause free radicals, which then can lead to cancer cells and then the multiplying of these cancer cells. I have always thought that this is the main cause of cancer and how it starts. I too have always wanted to go on a as perfectly possible as possible of a clean diet. My probs are finding the money to buy health foods, gluten free foods, organic foods. My mother has severe gluten sensitivities and buys organic etc.... however, despite her rationing each month and budgeting, after all the health food is bought and no 'poison' foods, she and dad alwasy have a week or over a week at the end of the month where they are out of money and out of food, so they skim to get by. Why must it be so expensive to eat so clean????? Does anyone have any good pointers on keeping the cost down? I am very bad about eating processed foods and drinking sodas and eating sugar and desire so much to change my lifestyle to pure clean foods, but it is so hard to do... even i didnt realize how hard it is, as we've tried to change our eating habits many times.

Sorry, im rambling on and on......

Thanks so much for sharing, I really appreciate this post

hilbiligrl

Oh my, you describe me perfectly. Yesterday I was feeling so well, i was thinking about the possibility of work and had an optimistic outlook.... then today, i wake up to feeling like a rotten corpse and in a very aggitated state and yes, i too say, i have no idea why! I bounce all over the place with symptoms, severity and functionability. Its enough to make the mentally strongest person in the world go a little nuts. I can't plan anything and i never have any idea as to how i will be from one hour to the next. It *****.

In high school i would miss 45 days or more a year.... id get so behind but somehow would make it up everytime. But i was always sick with migraines and exhausted, but at the same time drove myself to make straight As... if i made below a B, i would totally lose it. I wish I would have taken it easy in high school and chilled out and had a little fun. But oh well.

I hope the mestinon works well for him! It seems to work for alot of people on here, and for that, it's the first drug im gonna ask to try and hope like crazy it can break through the devastating exhaustion and weakness.

yes, the brain fog is horrible. Im kinda getting use to it, but at the same time, during peak episodes like your son's today, it just drives me nuts and i am just hopeless. I hear that teenagers have the chance of growing out of this... its seems i grew into it... lol. But i hope that your son grows out of this!!!

hilbiligrl

This probably won't help, but what you describe is exactly how i am on some days. It's so bad, it gets scary. But it seems to come and go.... several days in a row im am like how you describe, then a few days i kinda get a break, and then it comes again and so on and so forth, over and over. But i repeat questions, actions, etc to the point that it kinda either aggravates the hubby or he gets tickled with it or sometimes is as concerned as you are.... but im thinking he is starting to understand i simply can't help it. I hate it, i really do. This brain fog has been one of my symptoms for about a year and half now, in addition to lots more symptoms.

Im not on any meds right now, im awaiting vanderbilt and a new rare case doc to start me up on some type of regimen. I've read so many posts about mestinon and i want it to be the first thing i try, because my worse symptom of this disease is the incapacitating exhaustion 24/7. I am curious about the replies on this post, so as to know what to expect on side effects. I seem to be infamous to have all the rare side effects of almost everything i take.

I hope it's just the pots and not the med, especially if the med is working. Let's hope he pulls out of it quick. I couldn't imagine either of my children having what I have, I don't think I could handle it, so i admire your strength as a mom with a child with this.

many blessings

hilbiligrl

I took metoprolol for a short period of time well before i was diagnosed with autonomic dysfunction. A doctor prescribed it because they noticed my heart rate was always very high. I seemed to gain alot of weight in a short period of time. I worked in a pharmacy for several years as a tech, and was in school pursuing pharmacy school.... people do report hair loss with metoprolol, but i never lost hair with it.

I hope to hear more from others on this topic, as i stopped taking the metoprolol because of the weight gain. I can't remember if I felt better while taking it or not, but i know it slowed my heart down some. I had no idea how important that drug could be at that time.

sorry im not much help

hilbiligrl

I drop lots of things, but what i notice mostly is i lose EVERYTHING. I.E.: in one week i lost 4 tubes of chapstick... maybe 5... and they are in the house and only could be in one of 3 rooms... still cant find them. Im ALWAYS, ALWAYS asking hubby where he seen me put something or if he's saw something... this is everyday, many times a day. I run into things ALOT. It's as if my perception of knowing the door is there is gone and i turn right around and slam into it.... i've got bruises all over my legs where i run into doors, furniture, chairs... you name it.... even if i go to the docs office..... they probably think im on drugs or something.

I also have lots of confusion, memory loss, and can't even 'think' anymore. I'm like Leieze, i get so 'out of it' yet i know im out of it, but i can't force my brain to think logically or make sense and i get really scared that i may be losing my mind or actually have brain damage. Trying to talk to the docs or anyone anymore is so very very difficult and i get so embarssed due to word loss, the loss of the ability to form sentences, etc.... When im talking to a doc, or someone, i totally forget wat im talking about, who i am, where i am and what im there for. It lasts anywhere from mins to hours. And it seems to come in cycles too.... brain issues for several days in a row then a break from it a few days, and then again for a few days, and so on and so forth.

hope this helps some

hilbiligrl

I forgot to add, I have taken lexapro a few different times over the past 8 years and about 2 years ago was put on lopressor for a while due to the tachycardia and i never had hair loss with it, (and at that time i had no vitamins and i only ate about 3 times a week (i had gotten severely anorexic, but not on purpose, i was in a severe, severe state for a long while) .... but my mother, who has Chronns disease and celiac disease, has taken celexa and it made her hair fall out really bad, to the point of bald spots, but when she stopped taking it, it quit falling out. Celexa is an enantiomer of Lexapro, which means its the same as lexapro, but different... it's chemical structure is just like lexapro, but it's the mirror image of lexapro.... like the right hand compared to the left. Not sure if that has anything to do with you losing hair though since it seems hair loss is a bit common with pots without those meds you mentioned though.

hope that might help..... i keep having confusion issues, so my posts are kinda crappy here lately.... lol

good luck

hilbiligrl

Hello everyone..... Several months ago I started losing my hair BIG TIME.... i have waist length hair and have had long thick hair for many years now. My hair and I are tight.... lol. But really, if i had to cut or shave my hair, I would totally lose it. As i was saying, several months ago I started losing about 3 or 4 times more than the usual amount when showering, it was frightening for me and I worried for weeks. I started taking the hair, skin and nails vitamins, which directs you on the bottle to take 3 of them a day (I only took 2 a day), but within just a few days I could tell it was working. I have no idea for sure the vitamins did the trick or not, or if it was just one of my pots spells, but I stay supplied in those vitamins.... lol. I usually buy them when it's buy one get one free at cvs or walgreens in order to be able to afford the Brand of it.

I hope and pray I don't ever start losing my hair again..... I worried like crazy..... so i understand how it feels.

hilbiligrl

Hey again!

So sorry that we are both going through some very severe spells here lately. When i have a severe spell, all i can do is lay. I can't stand, speak, walk, move, ... nothing. I do notice that if when i go to the er with an episode, that when they make me lie on my back, i feel dramatically worse for some reason and i do notice a much more difficult time breathing if im on my back. I have to lay on one side or the other most times with my hands, arms, neck head and legs in a weird position in order to feel some relief of some kind. I take my bp and heart rate many times during the spell, my systolic is lower than when i stand of course.

But all in all, for me, I have no choice to lay down and remain as still as possible.... sigh... im just as clueless as you are.....

hilbiligrl

My brain is acting up tonight.... but, wen you have these episodes do you get the feeling that this is unquestionably life threatening or can cause sudden death? Yet, no one can find out what's wrong. Not trying to scare anyone, but that's just instinctly the feeling i get.

hilbiligrl

Lol, i keep messing up with learning how to post a reply.....

Lieze,

I got your message and already replied

I too have some good days, although very few during the month. The good days for me would be best described as a flu day for another, yet i can get up and move and walk for several hours and then i often will lapse into an attack. But most days are in and out of severe and mini episodes. I have studied myself, eating habits, etc and i can't really find a trigger for them. While i do think sugar makes it a little worse, but doesnt seem to provoke a severe episode. Every day is very different with symptoms, but everyday is a vast array of symptoms constantly, plus episodes.

Oh, when you say overreactive.... wow... that describes every cell in my body it seems! I forgot to add that in severe episodes that my sensory perception is multiplied by a million it seems. Just to hear a clock tick in the next room is massive agony and light, noise, movement, someone talking, hearing a phone ring, etc is pain inside my ears and throughout the body, overloading all sensory feelings so massive that you just want to explode or feel so utterly desperate to find a way to stop the agony.

Are you seeing doctors, or going to pursue autonomic testing?

(oh, and Merry Christmas

hilbiligrl

Hello Lieze, what you describe is almost exactly how I would describe my episodes. I have been wanting to post a question about severe 'death is upon me' episodes that literally feel link you are fighting death each and every second and desperately fighting a battle to live through another second, yet it goes on and on. I have these episodes and they can last for minutes, hours, days, weeks to months on end. They can happened in surges all day long, or constant for hours/days. I am a strong young women who can take on the world, yet these episodes cripple me in every state of mind and body and quiet frankly, they scare the **** out me and all i can do is allow the tears to flow and I am not a crier, nor am i an 'over-reactor' type person. Last week I took an episode that had me dropped in a floor in the hallway paralyzed from head to toe, not able to speak, or communicate or move or hardly think, yet my mental part can hear and know all things around me, yet i cant communicate. My symptoms vary some from yours, but the way you describe that 'death is upon you', is exactly how i feel and it is such a scary horrible feeling that turns me into a helpless and hopeless baby. My symptoms include paralysis all over, headaches, face pain in the eyes, eye socket, cheek bones, jaws; pain in the shoulder and arm, burning pain inside spinal cord at the base of my neck/head, severe catostropic exhaustion, disoreintation, confusion, cannot breathe, an over all 'sickness' feeling that is undescribably intense torture, and more. I am floored and most days I am in pure shock from the intense suffering that is undescribable. Last week I had my husband laying in the floor withe me in the hallway holding my hand crying for hours cuz no one knows what to do to help me. I have shook him and myself to the core, to the extent that I had a deep impulse that i needed to go ahead and set up a will, get life insurance, etc. I have never been so scared and I am the toughest person I have ever known in life.

The closest things that i can find to how these episodes feel is how they describe mast cell activation disorder, vasovagal episodes, autonomic attacks, anaphelatic shock episodes.... but even at that, my episodes contain so much more symptoms and severity than they describe. I have some thought that there may be seizure type activity involved yet that is a long term one somehow. I think i am hyper pots and many other issues, but I wont know for sure till vanderbilt in Feb.

I am 33, and just a few years ago was making straight As in organic chemistry, physics, calculus, etc. and was accepted as an alternate to pharmacy school..... and today, i can barely type all this out, form the sentences, spell halfway right, etc. My brain is so affected that for hours im confused at to who i am, where i am, and who the people are around me, yet at the same time i know how they are and at that same time I know that i am massively confused yet helpless in gaining basic brain function, but these severe episodes are so scary and I am so helpless. I know i need to call 911 but when i do, all my stats are fine and i lay there in the hospital bed for days at a time in a almost completely paralyzed state from head to toe, yet mentally aware and so exhausted and sick. They send me home everytime after doing nothing.

I am keeping up with my heart rate and bp at home and my stats will be somewhat ok, yet i seem to find a pattern that my systolic bp drops by 30-40 points, yet the diastolic may only increase by 10 and the heart rate will vary from 80-160

I am an intelligent women, (well, used to be) but these severe episodes have me hopelessly baffled and confused.

I am eager to hear from others, or suggestions or advice, as I have been meaning to ask for a while, but couldnt get my brain to work enough to type something out, plus the severe incapacitating exhaustion and sickness makes me too tired to even type.

I am glad i found someone who almost describes what i do, yet if you get as scared as i do like the next breath and you are gone, then I am so sorry you have to deal with this. I would rather it be me than my loved ones, or anyone else for that matter. It's as if we are looking face to face with death in each second of the episodes and your noses are touching and you can feel the warmth of deaths breath. I hope we find an answer, or at least a way to snap us out of these episodes or prevent them altogether. Because of a long lasting episode these past few weeks, tonight I can't even make it to my parents christmas dinner, so my children are there without me and I havent spent time with my close knit family in a good year. I'm hope alone, husband is on call towing, im starving, and I can't even stand up to walk to the kitchen and i've been 4 days without a shower. It is these episodes that have shook my belief in God altogether, I cannot understand why the suffering is so intense, yet continuous, waking up every day to this. Don't get me wrong, I love God dearly, was raised in church, have raised my children in church, prayed all my life, never done anything bad..... yet, now, wow.... this is a whole other level of existance that most people will never even get a twinkling of how great the suffering of this is. I've always had bad nerves, yet reacted calmly and boldly to all situations..... Im no longer calm, nor bold.... Im pretty lost and shocked at how massive this disease is, or whatever other diseases may be involved.

Gob Bless

hilbiligrl

Hi.... mine is usually 91-105 around the clock (which is while laying)... upon sitting, standing, taking shower or walking to the car (which is maybe once a week).... i gets to 140-160..... very rarely is it under 91, rarely, even waking up from sleep, even laying 72hrs straight with adequate sleep.... resting rate is still 91-105

hilbiligrl

I thought I was the only one who had this problem! I have an extremely difficult time getting to appts and I forewarn all doctors and therapist, dentist, eye doc, etc that I am too sick alot to make it to an appointment on short notice, as I never know when im gonna have a few good hours here and there. I miss sometimes 2 appts a week. This week I had 5 appts and only made it to 2 of them (but we had an ice storm too). I also always, always make my appts after 2 pm.... there's no way I could make it in the morning time. Even then, it still takes me hours to get ready. Last week i started getting ready at about 7:20 am for an appt at 3:30..... i still didnt get to put on makeup and was just lucky to make it. Now I don't feel so guilty for rescheduling so many!

hilbiligrl

I recently fired my doctor and out of word of mouth referral from a psychologist, i submitted my case to a local doc on my are who works on rare cases..... and I am on medicaid as well, thankfully they took me in after going through my records and screening me. (but i had been going through this 'bad doc' relationship for many years now and couldnt find a good doc who would put up with my 100s of sypmtoms. So, Before I found out that this new doc was accepting me (i found out 3 days ago, after waiting 2 mths), i at first called around the family, friends, asked on facebook and every therapist or doctor or specialist i talked to, i asked them who would they refer as a good primary care doc, someone who is patient and likes a challenge or deals with chronic stuff.... cuz that was my missing piece. I was calling doctor offices and asking them if they except new patients, but non where.... so i would call the big doctor groups and talk to a main person and asked if they had any docs that might treat chronic illness patients, or patients with rare diseases, etc. I was also, gonna wait till i got to vanderbilt this feb and ask them who they would prefer (if they new any in my area).

So, with medicare or medicaid.... call the medicaid number and find out who is accepting patients, even ask medicaid if they know of docs know for dealing with chronic, rare or uncommon cases. Then call docs offices and don't be afraid to ask the docs nurse of who you are trying to find stuff about. Some will help, some won't, but never stop pushing and don't let the 'ignorant/cold' ones stop you.

hope this helps!

hilbiligrl

Some of my biggest complaints of my 'attacks' have always been severe catastrophic weakness, hard time breathing, as if my lungs wont fully expand and as if my diaphram is just give out, like my muscles are too weak or too paralyzed to work.... I usally resort to panting and labored breathing.... i hate that feeling. Even combivent doesn't help. But, thanks girls for the input, because now I can suggest a few things at my next doc appt.

hilbiligrl

I too have the bobble head, alot. But i don't know why it does that. It's as if, if im sitting up, or standing, or sitting in a car... well, i need support for my neck... my head will just flop.... my family has seen me do this lots.... and its usually when im at my worse level of exhaustion (a state that i can be in for days/months).... It's like i wish they made something that i could support my neck and head to stay up! I also have always had this intense burning tingling inside the base of my head where it meets the neck, but its on the inside like inside the spinal cord burning and tingling..... no doc in my town knows anything about any of this, so i have to wait on vanderbilt to get the ball going in feb to get some answers.....

hilbiligrl

I have never, ever been able to drink much fluids, of any kind. Indeed, water does make me nauseaous, always has. But trying to drink fluids, is the hardest thing I could ever do. Since i was very little, i could only drink maybe a glass of fluid a day, im not kidding. About 2 or 3 times i month, i will get really thirsty and drink maybe 2 or 3 bottles of water in a day, but that is rare. Since my autonomic dysfunction has gotten worse over the past 2 years, i can only manage to drink a half of a bottle of water a day, im pushing it to drink a whole bottle and work on a second one.... but then i urinate three times the amount. If I force myself to drink more, i just throw up or im urinating literally every 5 mins for hours, its HORRIBLE...... What's weird is when I have a severe episode to were I am taken to the er in a rescue squad, despite only drinking less than one bottle of water a day, the er always says i am never dehydrated... how can this be? Till this day, i still can't get down much fluids at all... i try, and try very hard because I know its important.... but I just can't. (i love to eat, but over the past 2 years as i have progressed worse, i get amazingly full on just a few bites of food.... so i find myself, snacking all day... i can't eat a full meal in one sitting, ever... and fullness feeling after 2 bites is torturing as well)..... hope this helps a little.....

hilbiligrl

Im female, caucasian with Cherokee Indian, German and French

my question is to 'nowwhat!'...... if you don't mind me asking, what are your symptoms with EDS?

thanks

hilbiligrl

I was recently turned down for acceptance to the inpatient research clinic at Vanderbilt. They had told me that it would take 2 weeks before I would know an official acceptance or denial. They already had all my medical records, but i have been so sick that it took me a month to get the questionaire filled out and faxed back to them (it was like 13 pages of stuff). Within maybe 5 hours of faxing it, i had an email stating that I had been denied for admittance into the research program. I emailed them back and asked what reasons they deny, because I was so hanging on to that chance and i actually thought they would accept me hands down. But, maybe I don't understand how all this works and the reasons I would be turned down. Do yall know what reasons they would turn someone down so quickly? I admit, I have alot more symptoms that most i see on here, but everytime I read someone's post, it's like I am reading a detailed chapter of my own life. I have never found anyone who 'sounds' exactly like me until i came to this forum. But anyways, I wanted to ask that weeks ago as to reasons why someone would be turned down. Thanks everybody!

hilbiligrl

Hi all. I was going to college full time, entering pharmacy school, working almost full time at CVS pharmacy as a pharmacy tech, plus I help(ed) my husband with his towing business. I could actually drive the trucks and recover wrecks and tow cars, etc... and could go around the clock...... but I always dealt with weakness, severe extreme fatigue and general all over sickness every day for many years..... I was handling it ok up until I had a bad episode in april 2009, I struggled to get through my incompleted classes at college, and after finishing that semester late, I never recovered. I had to quit work and school in october of 2009 and i've been bedridden since. I can now hardly take care of myself, or fix my own food, let alone take care of 2 middle schoolers or even help them with their homework. I can only manage to drive maybe 1 day a week now due to the severity. I have worked like crazy all my life and now I can't. I hate it. Hoping i can become stable in the next year or so to figure out the rest of my life. I guess we will see. Whats funny is im 33, and my husband is 56 and he has been treated for 6 years with congestive heart failure. Looks like we both may be on the same heart meds... lol.

hilbiligrl (tennille)

Hello everyone! I've been reading post after post for about 2 mths now and i've went through all of them at least twice! I've learned so much as this forum in an invaluable tool for me and a Godsend, a true Godsend. Im a 33 yr old mother of 2. I had my first episode of autonomic dysfunction in 2002 after coming down with mono really bad (pots hasnt been diagnosed yet, although i just failed the tilt table test and my appointment at vanderbilt is in feb) but Vanderbilt ER said it was Autonomic Dsyfunction, and after reading posts on here, it all makes sense. I was a straight A student in college and was accepted as an alternate to pharmacy school a year and half ago, but came down with another episode in april of 2009 and have been down since.... mostly bedridden since october of last year. My long time doc and friend doesn't believe autonomic dysfunction is possible, so im currently searching for another doc.

Anyways, i have tons of questions, but i'll start off with my first 3 questions. I've battled really bad insomnia for over 10-12 years now and nothing has ever worked. I can go 4,5,6 days without little to no sleep and it makes me crazy. I had read on here that someone was taking lunesta with trazodone.... so I asked my doc for trazodone to be added to my lunesta that I had been taking for a year now. The lunesta never made me sleep, but helped me to calm down, i am guessing because it works on the gaba receptors like benzodiazapines do (i always done well on klonopin). I took trazodone about 2 years ago and i always slept longer and harder, but the next day i was sooooo tired and drained. I've been taking it again for about 2 weeks and it is working really good with the lunesta for sleep. But i've noticed it makes my heart rate come down considerably and 30 mins after i take it, i feel the extreme debilitating fatigue get worse and that feeling lasts well into the next day. So, I can't take it every night cuz one of my main symptoms of autonomic dysfunction or pots, is the extreme sickening weakness head to toe, and the trazodone adds to it, but in a different feeling sorta. I was wandering if anyone else has had trazodone to affect them this way.

Also, before i found out i had autonomic dysfunction, in march i started taking phentermine for a while. I remember wandering why i felt so darn bad all the time while taking it, plus i would have a hard time breathing when i took it as well. Im wandering if that is a medication that Pots patients should steer away from?

Also, i have had a chronic stopped up nose since high school or earlier and my doc has never done anything about it. I started taking zyrtec and ranitidine (aftger reading posts about mcad and trying wat one of yal had suggested with the zyrtec and ranitidine) and i've also been on allegra before, as well as tried claritin and prescription nasal sprays, all to no avail. I know just use dollar store nasal spray every day to open up my nose. I was wandering if anyone has ever heard of a chronic stopped up nose?

i'll have more questions to come, but my brain hasnt worked well these past few months and i get confused pretty easy and can't seem to 'organize' or remember my thoughts.

Thank you and it is so good to be able to be here!

hilbiligrl (tennille)

Hi nowwhat!

I have stiffness, then jelly legs back and forth. One day im so stiff that i baby step to the kitchen or barely able to roll over in bed or get up from a sitting or laying position, or heck, just any movement. Then the next day my legs can be jelly and wobbly. But I haven't ever really been stiff like this until this past year as my suspected pots has gotten dramatically worse with no improvements in over a year now, so the stiffness is new to me these past few months. Today im stiff all over really bad.

Im still learning everyday, as i have new symptoms on a weekly basis. I have no idea what's causing it. Seems like the right side of my body is more stiff than the left and hurts more, i dunno why though.

Im eager to hear some other responses though!

'hilbiligrl' (tennille)

here's my stats until i figure out how to do it permanantly: undiagnosed for over 8 years (maybe since childhood) until sept 2010. Diagnosed as autonomic dysfunction at vanderbilt ER. Awaiting testing and appointment with Vanderbilt in Feb. 33 yr old female with 2 kids. Curently taking Lunesta 3 mg and trazodone 50 mg for sleep. I suspect mcad and vasovagal syncope though.