kayjay

Hi wibbleway, I just wanted to tell you that I go pale as well. I actually tested positive (urine) for pheo 3 times but was went to NIH and I DO not have pheo. I am not saying that you shouldn't get checked. If you have it you will have sudden VERY HIGH spikes in blood pressure. My blood pressure will only get high sometimes. If you want any more info feel free to PM me. I have had every pheo related test there is... and I just have POTS with major adreal surges. Anyway... Pheos are very rare but every endocronologist I have seen has been convinced that I have one..... and I don't. I go "sheet white" in the face and get very sweaty when this happens to me. Best of luck .. if you want more info just ask me. Ig you do get tested make sure you have a plasma test... My urine tests are always positive b/c of the hyperadrenic POTS.

P.S. again ...I saw Dr. Fealy (like tearose) but I would see anyone there. Autonomic Neurologist are rare. I think at Mayo they are all literally world class. Kari

No long wait.. it seemed like it at the time. Email me and I will look up the # for the POTS clinic there. They really will check everything. I have BC/BS and they took it. It seemed like a long wait (3 months). But still go if you can. I was worried b/c I was better when I was there and I worried about the test results. Silly me, they know what they are doing to and you do not need to have any symptoms during the testing to get answers. They also don't put you though useless testing (they canceled my tilt-table test b/c they didn't need the info... Hopkins and NIH used me as a guinea pig... (again I'm a little bitter). Really I will even help you out with hotel info. and where to eat the food situation was VERY important to my hubby, we tried to pretend we were on vacations and oddly enough we had a pretty go time considering! Really ask us anything via email and we'll give you any info we can. Kari

PS I read what Kristen is drinking. If she can get her to drink V8. It has helped me a lot. The drs told me to get no more that 50% of my liquids from water (hard to do when you are thirsty) but too much water is bad for us too. - Flushes us out too much.

Kristen's Husband.... I also am a Special Ed Teacher and I got sick when I was 25. I am now 36. At first I had horrible night sweats, hair loss, weight loss, and other things that you describe. Anyway I went to Johns Hopkins in Baltimore.... was misdiagnosed...was sent to NIH.. over the next few years I gradually got better and we just thought that I had horrible mold allergies. I "got by" for a few years but I started to teach preschool (I have my M.Ed in special ed) b/c it was only 3 days a week. I got really sick again about a year ago and sick turned to unable to walk up the stairs by spring. I want to encourage you to try to get your wife out to the MAYO clinic in Rochester MINN. They finally helped me and diagnosed me. They did take my insurance and I will say Mayo clinic made Hopkins look like a DUMP.... (sorry if I sound bitter) anyway MAYO will take a team approach which your wife (and many of us need). They are considered the #1 hospital in the US and it is worth the trip. (Hopkins is # 2 yet they are worlds apart). If I can offer any help you can email me. I will share any info I can with you. Please keep hope that she was better before and will be better again. When you are in a "flare" things get bleak quickly. In my opinion the most important thing to do is to get her to the right place. Mayo is considered sort of pioneers of "pots diagnosis" much of the testing used elsewhere was developed there. Once you go there they will work with you long distance (I spoke with them Friday as I live in PA). Anyway the Autonomic Neurologist I saw there told me that there is only one Dr on the east coast he could recommend but that it "would take a really long time" to get in to see him he is in New york city.- Best wishes... ask us anything (I should let you chat with my hubby... he was in your shoes not too long ago). Best wishes to you and keeping Kristen in Prayer- Kari

Yes antibiotics "kill" the good bacteria in your gut also. I never take them without yogurt. I hope you feel better soon!

I will be praying for your son and your family. Take care of yourself and please keep us posted. With love- kayjay

Shell, I so sad for you... It sounds like you lost a good friend. I hope you get a new pet soon, it won't make you forget the cat that you loved so much... but it should bring you some happiness, and distraction. Best wishes for you... if you do get a new kitty please write us all about it and tell us what you name it! kayjay

Janey- I know it is so hard to need help!! But you NEED to take care of yourself. I went to the market yesterday with my mom and realized that I can't even read or think when I am shopping... I only made a partial list... thinking I would remember the basics....I came home with no eggs, no milk, no butter! Couldn't make it to the dairy isle and I had help!!! Can you get help in the store? I go to a market where they have people to help you.. you just have to ask and you should! also if you feel a little better later in the day... can you go to the market then? Mornings are harder for many of us. Sorry that you are going though this. It is so hard to ask for help... but someone out there will want to help you. Best wishes -kayjay

Valliali, I really think that I have the same EXACT problem (my husband thinks so too). If it makes you feel any better.. I should tell you that I hate hospitals and I went to the ER the first 4 times this happened. I truly believed (as did my husband)that I was going to die. I know when I was exercising, my heart rate went high then low and I felt like something was horribly wrong. I also AM NOT A FAINTER but I think my BP may have gotten very low, then the adrenalin kicked in and I then had rapid heart rate and high BP. The panic feeling is so hard to describe... I just really thought that I was going to die and on top of that the vision things were scary. The good news for me is that after about a month on Lexapro, a beta blocker, and Klonopin I no longer have these huge surges. I went unmedicated for years and only had a few of these attacks - (once drinking coffe outside in the heat, once after running up the stairs, and also when my son was born) This past spring I had a "surge" that would not go away and my heart rate stated in the 150's for a week ( I was in the hospital at the time). Anyway I want to assure you that if things settle down for you in a few hours (or less) you are probably ok... but if not you really need go to the dr's. Good luck and again I am sorry for you, even if I never have this problem again... I will never forget how awful it feels! If you do go to the ER try to have the person with you explain that it is not mental anxiety. I was given an ativain (like valium) in the er the first time and the Nurse kept telling me to "calm down". My husband wanted to smack her... Sometimes with our symptoms and as a young woman... the er dr's will treat you as though you are having a "mere panic" attack. Of course the ativan made me sound like a drunk when I called my mother, but it did nothing to help my hear rate or blood pressure. KayJay

YESSS -I have had this exact problem... for me it happened after a few weeks on YAZ and I was on my eliptical. I also get "sheet" white and panic. In my case, I think this happens when i get an extreme adrenal surge. The yaz also dehydated me. I now take Klonopin if I feel the panic or turn pale. I also have had this same reaction drinking coffee outside on a hot day and having an allergic reaction to a drug. I am sorry for you I know that they feel awful. I was misdiagnosed with pheochomacytoma which also makes you go "sheet white" and causes pots-like symptoms so make sure that you don't have that... I didn't exercise for 6 months and now I am sorry. You may want to cut back on the cardio for a little while or at least use a bike so you are sitting. Good luck to you I am sorry that this happened to you... Make sure you are hydrated! KayJay

Oh also What about allergies? They can be worse in the am. I am very allergic to dust mites so I have to take care to change my sheets and pillow cases a lot and wash them in HOT water. - Could you be allergic to something in your bedroom making things even worse? KayJay

Cat Lady... I'm sorry that mornings are hard for you too. For the past week I have done much better in the morning. I have been drinking a LARGE can of V8 and a G2 or large glass of water with a Nunn in it before I even get out of bed. I try to wait as long as I can to get up and as soon as I empty my bladder, I lay back down and put on Spanx higher power panties. This has helped me so much. I also do wear shoes with rocker bottoms from the MOMENT I get up. I used to love to go barefoot but I do much better with the so called "exercise" sandels. Also when I get up in the middle of the night to use the bathroom I drink something. I hope some of this helps you. I realized this morning when I took my children to the bus stop that I am doing much better in the Am than I was a week ago. What do you think about tilting the bed? I was told to do this and I haven't.

Hello all. I have a headache almost all of the time and I would like to know how you deal with it. I think b/c I have had migraine pain I am thankful that it is not severe... But it is every day. I do take asprin and I cannot have motrin or advil. I doesn't seem to be a good idea to take another med every day... but I also am suffering like a 4-6 pain headache every day. Any suggestions?

Are you having a scratch/ skin test or a challenge? I just went though this this summer because I wanted to be able to take advil/motrin and I had a very bad reaction to this med or an antibiotic that I was taking at the same time. Anyway the dr would not let me do the challenge b/c he said on the BB if I had a bad reaction I could die because the medication he would give me to stop the reaction would not work. A skin test would be fine... but if you are getting tested for some kind of medication they make you take a little of it and watch you for a few hours. If you have to go off of thebb it is only for a few days at the most... but I couldn't at the time stop. I hope this makes sense. Good Luck

I just wanted to let all of you know that MAYO finally explained why the birth control pill YAZ started a huge flare... It has diuretic properties. I had no idea! Anyway maybe many of you know this but there are several meds.... including YAZ that we should never take! KayJay

Alicia, I get really sick with allergies... my whole body... pretty extreme. The best solution for me has been to rinse my sinus with something called neilmed sinus rinse. After about 2 weeks I had no more problems. It has also kept me from getting ear infections and sinus infections. It is easier to use then a neti pot and I think a little less gross. I don't know if my allergies have anything to do with pots or not... but I do know that I feel better when allergies are not making me sicker. Best wishes- KayJay

Erik- I have hyperadergenic POTS. My rushes are so severe that I feel like I am going to die (for hours) any way Mayo clinic told me it was important to get a blood test to find out what kind you have to know how to treat it best. The checked my epinephine (ignore spelling please) levels after I was lying down for a half of an hour and then had me walk around for 10 min. I didn't even feel the "surges" but I had a huge increase in thoses stress hormones when I stood up. It might hel pyou to have this test done and If you what more info about it PM me and I will look it up. They do suck though! I play mind games with myself now so I am able to survive them better .

Dani- do you mind telling me how an anxiety attack feels? I have had adrenal surges. I was also told that sometimes after you have those terrible surges you can have panic attacks- as if your body "learns" how to panic. If you don't mind can you tell me how you can tell the difference? by the way- I am taking a klonopin each night before bed and It does lessen what I deal with at night. Also a beta blocker and lexapro seem to be helping as well. I went from not taking any meds ever to 3 every day but after about 3 to 4 weeks they are really helping me-kayjay

thanks for the info Flop. I would love to know about suppliments that might help.... I also wonder how many of you have hyperadrenic POTS. I do. I have had a really sick year and feel sad when I see my hair ALL over the house. I did cut it shorter but I used to like my hair. Now it just is thin and sad!

Has anyone had lots of shedding from klonopin... or after a bad flare? It makes sense that the adrenal surges that make you think you are a goner would make your hair fall out.. but is taking the klonopin making it worse?

Ruekat, This made me think of the death of my grandfather (when I was 19) and how I felt the physical pain of a "broken heart". For me depression and sadness hurt my heart ( real pain). I think that the benefits of antidepressants most of the time outweigh the risks. I take Lexapro for my POTS and while I do not have depression it helps with the my chest pain. I don't know just a thought. Laughter is supposed to be good for you and sadness and stress are not. I would tend to think that the problems were caused by the depression, not by the meds... although not every kind is good for every one. I know that I was given lexapro when I was 29 and sent to NIH where they looked for a tumor I did not have. I slowly got better. I look back and think that the lexapro help my undiagnosed dysautonomia. Anyway just a thought and a foggy one at that !

HI all, I just wanted to add my 2 cents (which might be worth less than 1 ! Anyway I asked about this at Mayo and I was told to get all three shots this year. Like many of you I have had terrible drug reactions. My reactions range from near death ( now I have an epi pen) to hives for a month. I was told to take benedryl and get the shots b/c a fever would be worse for me. I plan on trying to get the shots from my allergist and see if I can get them without the additives. Everyone needs to make their own choice but I was told that it is more risky to get sick then to get the shots. Best Wishes all Kay Jay

Jana, So happy to hear of your wonderful news. Thanks for sharing!!!! Blessings to you Kari

Shell, I have been taking Klonopin (my dr. wrote brand necessary) and It really helps me. I take it at bed time and I think it really helps me with GI issues as well. I realized how much it helped when I had to go off of it for a week.( I didn't feel the "need" for it but after about 5 days without it some of my symptoms came back). I asked a dr. when I was at mayo about becoming addicted to it and he told me that it was no big deal... just a problem for those people who have a history of drug abuse. I worried about taking it every day before then. I now take it every night and sometimes during the day if I really feel cruddy. Once you take it for a few weeks it doesn't make you so sleepy. During the day I also will cut the tab in half. For some reason my dr did not want me to have a generic for this one. I did not have a good experience with Lorazapan (ativan). It stopped working for me and in the beginning it made me feel like I was drunk. Also when I went off of it (slowly) I had withdraw symptoms. Best wishes to you Shell!!! I am praying that you feel better very soon. KayJay