k&ajsmom

Ive wondered about this. I am just getting over a 4 day excrutiating headache. It wasnt a migrane but originated in the base of my skull/neck area. I wondered as I was dealing with it if I was feeling worse because of the headache or it was just a normal spiral of symptoms since I seem to be just stuck in a bad rut lately. I do knowwhen I get these headaches it exxagerates the shift in bp from changing positions although catching it on a moniter seems impossiable. It seems to make it harder for my bp to transition from changing posture.

I would agree though, with katybug, yours sounds very similar to migrane, I would def. check with ur doc about this connection. Maybe if try a preventative medicine for the migranes it could help (assumming thats what it it?) If u get these from caffienne withdrawel, that can be another flag for migranes.

I hope u are feeling better though =( it sounds like a horrible spell, and Im so sorry ,please take care -sarah

agree with the above, It sounds like u may be overwhelmed by this news. I was just reading a study link through dinet under causes..chiari, about a lady who had decompression surgery and her symptoms dissappeared. This could be wonderful news in disguise? I hope it is for you, Ive also read there are therapies that are noninvasive to help with chiari if surgery isnt required. Im curious if you had alot of neck /headache symptoms? Good luck and take care- sarah

I did this alot when I first got sick. I would apologize to the nurses for having to check my vitals so much lol For me it was just grieving in a way and feeling guilty about being so sick. Now its kinda transformed into agitation and inpatience. I geuss our emotions adapt to survive as well as our bodies. Just breathe and pray for guidance, thats allI I can do sometimes. There is a lot of guilt that leads to our illnesses I think when things dont go as planned. Take care -sarah

ugh I know this feeling bebe. I cant explain it but its awful. I know fo rme its def. not panic because I can be perfectly calm although distressed over the yucky feeling.

I just gave up gluten 3 days ago if hopes it will help....I hope it does =( This feeling for me is accompannied by increase cardiac output but not always increase bpm. I hope u feel beter soon and Ill be praying for u...take care -sarah

Hi, Im sorry ur feeling so poorly. WHen I first got really sick I googled my symptoms, and web md said I had Parvo hahahaha wont do that again...lol

anyways , I lost about 35 lbs from nausea, diarhea, churning, gnawing pain and cramping (along with the other lovely pots symptoms) At first the doc said I had crohns....nope. I had a colonoscopy while I was admitted for my cardiac and bp issues and it was normal. I havent gotten to the bottom of my Pots causes and stomach issues yet but I can say I think its all related. I know alot of people on here have gi motility issues one way or the other so sadly I think its normal. My gi symptoms wax and wane but never really get better. I use vinegar and probiotic for the nausea and it helps a little, enough to stop the weight loss anyways. I also hvae to take immodium and zantac to be able to eat. I still liv ein the bathroom but atleats it helps a little. I hope we both can find a reason...sooner rather than later. Ive been wondering if mine is caused my abdominal pooling since my legs dont seem to pool yet I feel the blood leave my chest when I stand??

ugh anyways good luck and sorry I dont have an good advice, just your not alone on this one. Take care -sarah

I know I SHOULD do this lol I was actually sitting here thinking of writing one to my kids too. I feel so guilty sometimes about not being a good mom anymore I think it would be good to leave eveyone here a little "love" note =) Thx for the positive thoughts

I dont have insurance...its awful. I check my meds at every pharmacy before I fill it. Some u can find on a low cost plan at places like walmart, walgreens and kmart. I get my florinef generic (fludrocortisone) at rite aid for $27 i think, by far the cheepest around. The next cheapest was Kmart for 50. ALso I havent done this yet, but if you go to the manufacturer of the meds website there is forms u can fill out and mail in or fax I asusme, and get free or discounted meds, sometimes vouchers. They do this in an incentive to get tax credits from the government. Check it out, it may help u (Im not sure who makes florinef, but I know merck and glaxo-smith and kline do this for sure)

I use Lifesource, its been great and pretty accurate and never errs even when my bp is way low with really high hr

eek..yeah I geuss I should go head and get it rolling...wow 2 years!!! no wonder you are so releived Dani, thats a long battle!!!

wow, Im very excited to see the results of this study and of course I hope your doing well and find great benefits from it, take care and look forward to reading more of your experience.

I like those results better too..lol I have to agree with the others comments and keep faith. When you look at how many members are on this forum and how many are active, you have to assume there are many many people recovered we dont hear about. I hope we are all part of "that" crowd one day. Not that I wouldn't miss u guys lol And like looney said, I feel my worst enemy has been letting myself stay sedintary after the hospital stay just not knowing what to do with myself.

Congrats Dani, Im so happy you will have some help and this is behind you!! yayay!!

Hi guys, I need some advice. I am drowning in debt due to being unable to work and bills piling up. I am uninsured and have medical bills that I nickel and dime but it is so overwhelming as Im sure most of u can relate to. I have considered bankruptcy however, I really dont wanna go that route and honestly I can afford the bankruptcy fees and it really doesn't fix the problem.

My question is if I file for SSI should I wait ?

I have had atonaumic dysfunction since childhood however it never challenged me in adulthood till this past June/july when POTS hit me. Matter of fact I didnt even have a pcp doctor cause I never was sick excpet ofr the occassional bonchitis or albuterol refill. I was diagnosed in the hospital in October and really havent had any other testing since, just a lost pcp doctor whom I have kinda given up on. I have a specialist appointment in June 13'. Should I wait to file so I will have more medical documentation showing I am really incapacitated. Im afraid my medical records since Ive only beensick since June and didnt get diagnosed till Oct, will just cause more denials and appeals.

So far I have only been diagnosed with auto. dysf, and pots.

Before I was self-emplyed, so I was wondering if htis would have any bearing on my ssi as well??

ANy advice here? also I have heard from one person who says def. get a lawyer and then another who said dont , its a waste of money???

I know Im gonna have to file because I cant find any source of income in forseeable future so I dont know what else to do??? At this time I am having a hard time even paying the utilities =(

Thx- sarah

ugh I really hate those results. =( I know however alot of us that have gotten better are out gratefully living their lives again but sad face still.

I got really sick in June/July, hospitalized in Oct 12, and by then I was bedridden and still pretty much am. I have had maybe a total of ten days since october that I left the house and most of the days home Ive been mostly bedridden. SOmedays I can shower and cook dinner OR clean the house but for the most part, I feel pretty stuck because of cardiac symptoms.

Im not sure cause of mine since its been progressing since I was a toddler but I have some suspicions with mcas,or some kind endocrine disorder?? its really hard to geuss, waiting on my appointment in June 13...cant wait but it feels like forever. =(

Sorry you have been struggling since the birth of your baby. I cant imagine. I have two kids and was symptomatic during the beginning of my pregnancies and had preterm births but after was fine. Congrats though on your little one, and hang in there. =) I pray medical advancements will happen sooner rather than later. and "fix" all of us... Take care -Sarah

Ive tried bc pre pots and did not fare well with them, although theoretically I would think that they would help. Im worried about the clotting risk as well.

I found an article last night that stated that POTS and some other forms of dysautonomia are more common among "young" women because it is thought to be a disorder stimulated by progesterone dominant hormone imbalances.

It was interesting but I couldnt concentrate on it so I logged off and now I cant find it....ugh sleepy brain!!! Ill have to find it and post it when I do. It also said something about endometriosis being almost 100% of the time linked with cfs sufferers and then connected with dysautonomia disorders. hmm...really have to find this link..lol

anyways, I am not positive when I have afib. I had a confirmed "run" of it in an ambulance and it felt very similiar to pvc's excpet no thump or boom or the extra beat. Just kind of a continous flutter and uneasyness. Also my heart excelerated.Which isnt uncommin for all of us anyways. I felt anxious, even more so than usual, but no pain that I can remember. It was also hard to feel any kind of rhythem to my pulse. Im not sure if thats what I feel occassionally at home. I worry it may be but then again anxiety can play tricks on your reasoning. I just know sometimes my "pvc's" dont feel like pvcs. This usually happens after I have some brady, and sometimes after tachy and my pulse feels weak. Maybe its trying to speed back up and cant find a rythem. ugh I dont know?

I have been told though that I have afib and it can happen unnoticed. Like svt's though I am told it is basically benign as long as it converts to a normal rhythm eventually, however this doesn't comfort the already overly-anxious mind lol. (please excuse my spelling and rambling, Im exhausted lol) Take care ladies....I think I need a nap then find that article =p

thx Katybug,will def. check it out!!! =)

Thx tinks,

Im just trying to leave no stone unturned lol It does seem certain conditions run together, autism and eds have been ones of I hear of alot, autism the one I couldnt figure out how it connected. I initially disregarded any possibility of eds but after some researh on it, its def. is something i should atleast have ruled out. I seem to have more characteristics than I originally thought. Thx again and take care =)

Great little article, gonna research the mentioned herbals. Thx Alex =))

yay, im so good to hear your home and doing as well as can be expected. Continue to keep u in my prayers for a speedy recovery and great improvements!

congrats on the surprise, although I know your probaly a little overwhelmed. I agree with everyone elses posts and just wanted to offer my support as well. Hopefully you will be one whose body levels out during pregnancy. =)

I have autistic traits, since I was little I have always "thought" differently than most. The process is just different. I had a hard time being social, still do and have many of the charateristics for mild functional autism. I have never been diagnosed however I remember a doctor telling me I scored high on the assessment years and years ago and was surprised I didnt have more problems when I was little. I was manically phobic beyond just being shy. I still have a physical reaction just making eye contact with people, lol, I know its silly but it just is what it is. ?? Im horrifically unorganized yet ocd with minor things. Extremely maticulous with observation yet chaotic in my own thoughts. Part of why its taken me so long to figure all this stuff out, I focus on irrelevant things sometimes. lol grr its frustrating.

I keep seeing autism mentioned on here. And I wonder what the relation is or if someone could point me to a good article so I can understand this a bit more. I would greatly appreciate it =))

So over the last two days I have slid back down hill drastically. I went from sorta functional saturday to havent even been outta bed in 2 days. Horrible flutters and adrenaline all those yucky symptoms. I also feel suddenly like Im having afib occassionally and I went into a drastic brady episode for 12 hours from being tachy the day before right before these wierd flutters and arythmias.

The only thing i can come up with is, is that its close to THAT time of the month. I have never really payed attention to corellating symptoms with pms although I knew I felt worse during this time thi sis the first time its been so dramatically noticable.

Ive been researhing effects of estrogen increases and there seems to be alot of symptoms that overlap POTS and alot of connections with the same chemicals that can be potentially involved with Pots ie; cortisol, endorphins, serotonin etc.

I however havent found any direct articles on if there is an actual correlation . I was thinking maybe Im having an OVERproduction of estrogen of something ...lol Just grabbing at straws here but my heart is doing circus tricks today and Im so stressed and sick..this isnt normal pms for me...this is pms on steroids...!!!!

I know there is alot of discussion on here about this but cant find any medical articles relating the two...is there any you have run across?? and how do you guys deal with Prems symptons reaking havoc. I feel like I have been set back by 2 months here in progress <sighhh>

Tia if you can give me any info- Sarah

Of course there is. Pots is so broad, it can be chronic or it can be secondary to something causing it. So if whatever is casuing it goes away or gets treated or better...its poss Pots can resolve. Some people expierence it and it goes away and they never know why. I hope for all of us it can go away. Dont give up that fight u have to get to the bottom of it. =) take care

yes and no. I think it really depends on the person. I took zoloft (sertraline) for about 2 months and had a pretty bad neurological reaction (just call me twitchy haha) and had to go cold turkey off 100 mgs. However, before the reaction, it was helping me. Not greatly but it was a tool I felt was useful however I dont think Im willing to go through withdrawels and neurological reactions again. I would recommend giving one a try but have your doc start you at a low dose and move slowly with it to make sure your system has a chance to adjust to it. Good luck and remember everyone is different so if it doesnt work for one of us doesn't mean it wont work for u..=)

yes, this happens sometimes with an air hungry/starved feeling and I get very sleepy. Always during the day. It was really bad in the beginning and comes and goes.