lissy

You know something very bizarre when I first got severe ill I went to a rheumy and I had the all the tests for Lupus and the aPPt test was a part of that panel. Which is the APS test and it was positive and you have to have the test repeated 3 times all positive with a certain amount of time in between each test anyway the next tests were negative but it was kinda interesting why it was positive to begin with and no you are bringing up this correlation with dys. I am so glad your getting more information and putting all the pieces together in your case:)

OK, everyone thanks for replies I have to have my tooth pulled tomorrow and I'm terrified!!!!! What is the BEST numbing med for US??? I hope I hear some input on here before 2morrow I am so worried something will go wrong....I am also going to have the pheo test done sometime this week all this stress and infection and meds I hope don't affect the test, does anyone know??? I am in extreme panic Lissy

Well it started as having a bad month of weird episodes (adrenal surges) then came menses and then New Years Eve a cold virus /respiratory infection!!!...and it doesn't stop there my abscess tooth started again and possible yeast infection this is all going on at once and driving me nuts!! I go to the doc tomorrow to talk about this surges which I called last week to schedule before all this other stuff started and now my doc is going to be pulling her hair out 2morrow with all my problems. I have only seen this doctor 3 times in the past year and every time I go I have many issues going on. Is this pretty common amoungst us medical outcasts? Hoping one med can take care of all these problems (infections) I am so drained I wish I had the normal health issues that most get... cross your fingers for me for some easy relief Lissy

I'm unsure if it costs more a quick call would help you figure the price difference. You know I also recently seen a program on T.V about lazer dentistry no meds needed and thought this would be great option for all us suffers I am looking online for more informaton. Lissy

Hey, Yes I have teeth problems I was wondering where the holes were?, I have some along the gum line more like indents and was told its because I have brushed to hard and wore away the enamel and they could fill them. I have no courage to let any doc give me any meds yet! I need lots of work done and I need to just get over my fears before it starts affecting my health... Good Luck with your appointments:)

I also have this problem and have responded to past posts. My cycle brings on More fatigue( almost bed bound), weakness, off balance, and I get weaker and weaker till it ends and it takes my body at least a week to recover. Its very bizarre to me that before my severe onset of dysautonomia I had a baby felt extremely weak but when my 1st cycle came after the postpartum time is when I crashed and never returned to normal function and it seemed every month would add new symptoms. For a long time I thought my illness was gyno related and I badger my OB for months after delivery thinking they missed something or something had went wrong with delivery, but I imagine the blood loss caused the downslide of symptoms and hormonal changes. I have thought about if I could find a way to end my cycle I may get better; the ablation may help but I am a worrier and think of something else going wrong. I have not tried any BC because I have had some weird blood clotting results in the past... There has to be something to stop the worsening of symptoms just haven't found it yet and if I do I will let everyone know!!! Lissy

I have 5 children and always worried if they somehow were passed this from me ,and none of them showed any signs except my last born and when I brought her home from the hospital she seemed very weak to me and she will be 3 in March she is not interested in learning and potty training has not been going well either the physical things I notice is she gets tired quickly and has pooling the same as I do...I have not mentioned it to the doctor yet because I was only able to get my answers at Cleveland Clinic and I would hate to put her through everything I have been through. She is pretty active and I will investigate this further in the near future I pray she doesn't have it and I hate any child would have to suffer like this. My 4 year old daughter has been complaining of leg pain and being tired alot of the time so I have been worrying alot and will probally be in the doctors office pretty often. ***and I almost forgot things to help with the learning, shes probally learning and absorbing more than you realize with my 4 year old when she was 3 I tried and tried to teach her letters numbers and all the basics and it seemed like she possibly had a learning disability but one day literally she sang her ABC'S and after I gave her a pencil and showed her how to write her name I sware the next day she was writing her name I couldn't believe it she is so much into learning about everything now its amazing I think its like a switch just make it fun and encouraging. She made student of the month last month Pre-K 2 1/2 hours a day and it keeps her excited about learning. Your daughter may not feel well often but maybe if you were to find a preschool program a few hours a day for only 2 days a week she may really enjoy it. Sick kids go to school too, just for socialization might help her in the long run. I may be totally wrong she may be too sick and sorry if thats the case just some suggestions.

Well thats good news sorry so sensitive though

Hello, I have been Dxed being hypovolemic had the testing (*not severely) but I always wondered why build blood up when you can get a transfusion that may be a stupid question... but I got sicker and sicker with every child delivery I had and also hemorrhaged pretty severely and they probally should have gave me a transfusion which could have prevented the decline to begin with... Has anyone been actually been dxed being hypo, built it up and recovered? (Or is something once low you must always keep building?) Like a type of total anemia.. Tuesday---I have a question you say you have been able to tell the difference as when its low and full does it fluctuate? Or have you recovered and now you can see the difference? I was told that flornief builds the volume and the symptoms decrease almost completely and can come and go in times of stress (body stress, illness, menstrual cycles) I can't speak on that because I have not tried it yet ,because I wanted more answers medically to make sure I wasn't going to affect my health even more because something may be causing this and something may have been overlooked and I'd be covering my bodies natural clue to what the real problem is. If that makes any sense. I have had times of feeling almost completely normal that lasted months at a time so can your volume increase on its own or are the symptoms not really based on volume? Too much thought for me right now so I'll end with that:)

Hey, Well I have taken a short break from seeing docs for a few months except when I had the lung issue. So I'm back at it again seeking a new family doctor and its so exhausting having Medicaid its like close your eyes and just point to one in the yellow pages...its sad to me that not only we have to fight a chronic condition but also fight to find a doctor competent enough to handle our issues. Even with me going to Cleveland Clinic I had all the tests said I had pooling in legs, low blood volume,and increase in heart rate when standing I didn't get a written or verbal Diagnosis ( what is that suppose to mean???) I was prescribed florinef and miodrine and they wanted me to come back for some vascular leg testing and I was like for what really??? Is that for their own research or what all the other tests were normal no autonomic failure so whats the point! I want to know what the **** has went wrong to cause this and if something else is causing this why do I have such a hard time getting someone to find out the culprit. Why am I doing all this research on a computer why isn't a doctor interested enough to become dedicated and find out what is truly wrong with me??? I am tired, tired everyday of chasing an answer that I have to research and take to a doctor to say "please do this test". Why have I seen 30 doctors in 3 years??? Thats unbelievable Sometimes I feel like giving up I am out of motivation mentally and definitely physically. I have been calling Doctors offices seeking a new one but I am asking are you capable of handling my condition or situation? so I am awaiting return calls....My problems are TOO big for the average doctor and I'm glad I realize that but that might honestly mean I no longer can find medical care:P It worry me if I was in a medical crisis I would probally not survive its a true fear of mine now. I've been to the ER with extreme tachy and they wanted to give me heart meds to slow it down I had to argue with the doc I need FLUID and it was at a stand still until he went off shift 5 hours later and finally the next doctor listened and gave me fluids and it went down.When my lung issue happened my heart was racing so bad and palping out of my chest they wanted to give me some anxiety meds and the phenumothorax had popped right there laying in the ER.What if I had a pulmonary embolism or something and they are injecting me with zanax or something I would have been out of it , its scary and I trust not one doctor anymore. That all puts me in in a terrible position what should I really do ,just give up. I know I'm not the only one that has felt this way and have had many negative experiences what can I do to keep going on this medical nightmare? When I find a new doctor do I let them know everything to begin with I need tests done that should not be postponed or do all doctors need to go through their own process please let me know.... Thanks for listening I'm so overwhelmed and have been feeling awful lately Lissy

Wow Lieze keep me posted and Ill do the same maybe we can rule in or rule out some things.

Thanks Lieze I found a post by StacyRN and was curious what happened with her and did she recover and have the surgery...that was back in October. I know I will look into this further I also have axillary freckles on one of my arms which goes with neurofibromatos which can cause a pheo. I just am so unsure I definitely dont feel fine ever! I'm pretty ill most days and the attacks happen a few times a month,And nothing seems to be bringing them on...I just want an accurate answer to my health I wish we didn't have to experience this either.

Hey all, I went to a geneticist a few months back and she mentioned it but I just blew it off cause I googled the symptoms and high blood pressure seemed like it needed to be a major symptom and problem. I have most of the same problems as everyone else on here but I'd like to explain these episodes I have and I just thought it was just part of POTS and it may be but let me explain and see what you all think. I have had so called extreme panic attacks since I was 18 they would come and go they would last no more than an hour, and this is what they felt like: I felt mentally disconnect, panicky, in fear ,dilated pupils, sweaty , clammy, heart racing sitting or laying, very dizzy it happens at any time and then it disappears as quick as it started. It happened last night and I took my B/P it was 125/85 ,normally on a day to day basis its 80-90/ 60-70 heart rate was 104 laying down. It took about an hour to go away and I was my normal fatigue self after that.... So my question is do you guys have these episodes and have been ruled out for pheo? The geneticist said to tell my GP and have the tests done when I feel my worst but its so unpredictable when its coming. I'm so tired of test like most of you and I know I'll have to badger a doctor just to order another test this is so frustrating! Any replies are greatly appreciated Lissy

32 Female I am Irish, German, Polish, American Indian (mother is half german/polish) (father is half irish half indian)

Hi, I would suggest seeing a blood specialist maybe a blood disorder going on...???? A few come to mind antiphospholipid syndrome,Thrombotic thrombocytopenic purpura . Maybe I'm totally off but worth checking good luck. Lissy

Hey all, I have sensitivities to everything and don't feel believed or taken seriously with my past doctors. Seems like they just seen it as anxiety attacks ,but I know why I have any anxiety when I take meds because of the feelings it gives me, my side-effects are just like a panic attack but 10X more severe and I shake uncontrollably and my heart races I feel hot, seems like I become so focused on my breathing and my mind gets in a stuck in a extreme state of fear.My whole body changes within 15-45 minutes after taking a medication, when I have had meds from an I.V ohhh boy it was instantly . I have felt so bad and thought I would die so many times from a medication. I have been involved in so many argument's with doctors and have had them explain the possible side-effects with me over and over and actually stay in my ER rooms just so they see what happens , then all they wanna do is give me more meds (xanax, or something to calm my system) I end up just leaving and never feel understood... I have read the leaflets the more professional parts that come with medication and most meds say if you have CNS involvement(disorders,diseases) it can cause different side-effects .I know our CNS and ANS are different systems but maybe they are affected the same, whatever crosses the blood-brain barrier has potential to affect anything and everything. Our bodies can not even adjust the normal functions properly so what makes the Medical field think we would react the same as a normal properly working body? The only solution I have gotten in past is to take children's doses or to just pray and hope it doesn't permanently affect me. Maybe someone that reads this might be able to do more research into the blood-brain barrier aspect and get some more information for us all that have these issues. Lissy

I also think exercise is benificial I always feel more dizzy if I do exercises standing so I do floor activites ( leg-lifts, push ups) and I recently moved iinto a home with 2 levels so I go up and down the stairs at least 20 times a day which I thought would be impossible and my legs hurt very bad for a few days.I know building leg muscles is suppose to help so I guess I'll see in a few months. I am determined to strenghing my body little by little I have been getting my appetite back finally,and I have gained a few lbs and hope to stay on this slowly improving path. Swimming I imagine would be good because less gravity and more boyantcy ,I love to swim but have no ascess to a pool.

Hey all, I just went to my hairstylist yesterday and we spoke about this actually and I was mentioning my dry scalp and it seems to grow less around the front and she said it has to do with lack of blood flow to the scalp which makes absolute sense. Low blood flow leads to dry scalp and the hair follicles expand and the hair falls out and stunts the growth process. She told me about TEA TREE shampoos awhile back , and I have been looking into more healthy oils to moisturize with. Do you all have dry scalp with the hair loss? Anyway hope this helps Lissy

Hi, I have been getting panic attacks or what appears to be for many years, there aren't no specific foods for me. From what I understood it has to be with the blood pooling in the abdomen and it causes lower B/P to the brain to drop which would increase adrenalin rushes which lead to panic attacks. It helps to eat smaller amounts and I also lay down (not completely) just sit with my legs up and it helps so much. When it started years ago I was having some hypoglycemic episodes which stopped so maybe have that checked. Lissy good luck!

Well I went to the lung doc yesterday and he said the phenumothoriax was healing and while in the ER they said my CT showed NO emphysema so I asked him to look over it. And to my surprise he said NO I wouldn't say you have emphysema (***I was DX with it 2 1/2 years ago) when I went to the ER for my BIGGEST 1st POTS crash and they told me I had emphysema and I've been very worried and secretly depressed about it...So that was a huge relief thank GOD. But he said my lungs are stretchy??? and I thought EDS and said it and he just blew my off I don't even know if he knew what I was talking about. And when went to the genetic doc a few months ago I mentioned (EDS) to her also and she said well what kind of stretchy tricks can u show me and I don't really have any, so I was wondering can you just be internally stretchy??? Anyway had to let you all know the update:) Have a good night all Migraine headache all day gotta lay down Lissy

Welcome, I know in the beginning of my severe symptoms I managed my symptoms with laying and staying in a certain position and I had alot of shortness of breath and those specific feelings drove me to do none stop searching to find what was wrong with me. I never got an answer and it took about a year for those intense symptoms to subside . And describing the recharging is exactly whats its like eventually my battery stayed low with few and far between spurts of short term energy, and thats where its stayed. Has he had his lungs examined yet? I hope you find answers soon! Lissy

Have to add to that about 7 years ago when I was having alot of bizarre symptoms and got DX'd with anxiety and major depression I took lexapro and it also saved my life I was actually probally having a POTS Period and I was 95% healthy after taking that for about 4 months. At that time I thought it was a miracle drug because it helped ***everything I was dealing with. I have thought of trying it again but am nervous since every time I take anything I get severe (like) anxiety attacks with tremors. But I'll probally at least try soon. Lissy

I have a rash that began after the major decline in health (POTS) and have ruled out lupus also...This is a weird rash like eczema and its in a private area it mostly stays all the time and very uncomfortable. I also had a rash on my face a few times where it would just turn red and feel really hot for about 1 hr and then it would go away. I think I will see a dermatologist soon just to see what the exact name of the condition is and see if a cream might help. Lissy

Thanks for concern I am healing I don't have the palps or much pain anymore and I got a appointment this coming Tuesday with the lung specialist, my family doc shown no urgency and pretty much tried to lead me on a wild goose chase and told me to call my cardio and get an appointment after I had already told her he was out for a month. So I just took it easy and I live like 2 blocks from the hospital so I just kept an eye on my breathing and heart symptoms and PRAYED for nothing to go wrong and so far so good. But I will be going Tuesday to find out some more answers... I was scared to death in the ER I thought I was gonna die from a heart attack and the ER doc was so amateur it seems. I kept telling him my valve is clicking SO bad and it hurts something is wrong and he told me your heart is fine and since I'm so thin I am just aware of it beating right then!!! I could have choked him I was so out of breath I couldn't even argue.But I survived and thank god for that. Lissy