kayjay

Pots and allergy problems started at the same time for me. I also have more systemic reactions and first had problems with black mold exposure when I was pregnant. I think both caused the pots. I don't think I have food allergies- but I can't do dairy. I have extreme drug reactions and being around something I am allergic to causes POTS symptoms. i feel like a connection is there for me but I don't know how exactly. We should do a poll to find out how many of us have allergies- Things that help me -No Carpets-No curtains- no down or feathers. Also a special air filter attached to our heat and a/c/ If you want info I can ask my husband. Also I don't let anyone (hubby or children) in bed unwashed- hair really holds pollen. Allergist didn't help me before my POTS diagnosis. he thought I was too sick for the level of my allergies- I have a good allergist now. Good luck

Hi cat lady, I hope your hives are gone! Anyway I have a different take on your post. Most people who will get the flu shot are more likely to get the swine flu because of other factors. What I mean is I always get the flu shot because I was a teacher (high risk with the little ones). Also I have children of my own and our exposure from school, church, school bus, friends, cousins, etc. is much greater then people who spend more time with adults. I had the flu shot this year and I want to get the swine flu shot as well. My husband has never had the flu but his exposure to let's say high risk groups is much less. He has also never gotten a flu shot. Also I am more the physical caretaker of our children. I am the one who handles all of the "dirty stuff" that comes in the door! I think that people who think they need the regular flu shot under 65 are the mostly the same people who are going to be the most exposed to the H1N1. It also may be that people who got the regular flu shot had a false sense of security and were less careful about hand washing etc. thinking they wouldn't get sick. "I had my flu shot so I'm not going to get sick". Anyway just my thoughts. Every year I have not gotten a flu shot, I have gotten really sick so I am happy to get both shots. Hope this make sense ...I usually don't.... And a I really hope your reaction is gone!!!! kayjay

Hi- I waited to go to mayo- although it was 3 months it felt like forever. For me it was worth it. I have had pots for 11 years but it took me 10 years to get diagnosed. You must have a great endo- my endo from Johns Hopkins just wanted me to have a pheo and he ignored all kinds of lab results. Also I cannot tell you how much better Mayo is overall as a hospital then anywhere I have been. My husband and I were constantly amazed. If you can get "stablized" at home and wait to go.. I think it will be worth it to you. I got clear information. Difinitive answers and now I can go back or contact Mayo any time I need to. One thing to keep in mind though.... Mayo told me that "recovery" (such as it is for me b/c I have had POTS fpr such a long time and got it when I was expecting my first child) may not be what I want. Anyway I did not come home from mayo "cured". They repeatly told me that it would be at least 9 months before I was doing better. I have to remember to keep my expectations realistic. I live in PA and would want anyone I know with an unusal problem to go to Mayo. ( although for surgery I would still go to Johns Hopkins). For Jana - Rochester Minn. I think of that as THE Mayo clinic. I know I am rambling but I LOVE THE MAYO CLINIC and I hope you go!

grey- I have been wearing spanks higher power power panties. I am supposed to get fitted for reg compression hose. I like the spanks b/c they go up above your waist and don't "cut into you". They are a little hard to get on. I wear regular undies under them so I can wear them more then once (TMI?) they do help but "real compression might be better. I also have layered the spanks under stretchy leggings so I get a little more support down my legs. I also really recommend MBT"S or may Sketcher's shoes with the rocker bottom. (my cousin loves her sketchers- she just had a baby to she is not wearing them for POTS.

Cat Lady.... i know you should never take anything in the cipro family... someone else posted on this I think they are quinolines. I took avelox and had my first ambulance trip as well as hive for a month. Feel better soon!!! I can't take sulfa antibiotics either. SO you should Always have benedryl and zertec or other when you try a new drug!

Elfie, So sorry about your loss. You are in a rough patch. I will be keep you and your family in my prayers. Vomiting is a major symptom for me. When I am just ok I have tummy stress (queasy feeling). There are many reason I "throw up". When I feel this way it helps to go to bed with a bucket nearby. Usually if I lay down it with help me not throw up. The weird thing with for me is sometimes when you are sick you feel better after (excuse me ) barfing. When it is just pots thing I don't feel better after. Feel better- kayjay

Am I the only POTSY that does not like salt? I was raised without the salt shaker and on unprocessed food. I have to make myself salt my food. For me I do not crave salt like I would if I was exercising a lot or playing a sport. It is so weird to me to have to eat salt when I am not sweating.... I do like dill pickles though and I have started buying salted nuts. I make myself drink salty drinks.

Grey... I am so sorry about this.... I don't even know how to comfort you but to let you know that there are jerks everywhere.... Do you get to see the nurse practicioner before you leave? She answered a my questions and I have spoken to her by phone 2 times since I got home. Also even with your mom with you... make a list of everything. I went right though my list. Was this a neurologist? One of the cadio dr. didin't even show for my appointment but I didn't care b/c i was there to see a neuro- I wish you well. Get what you can out of these people before you come home!! (((HUG))) kari

Amy, I will tell you name brand Klonopin does help me. I read about Klonopin as a treatment for chronic fatigue and asked for it. I take .05 every night and I now longer wake up to pee 6 times and I rarely have a surge from changing positions in my sleep. I have been taking it since june, stopped for my mayo clinic visit... had nightime surges again and have been taking it ever since. I feel like ativan is evil . Kari

I run low grade fevers. Sore throat also. Even at mayo clinic during the sweat test i had to go to a higher temp because I started higher. Have you been diagnosed? Have you had an ANA test? Another thought ...allergies can make autonomic dysfunction worse. Could you have dust mite allergies (I was worse when I had a down comforter on my bed -feathers). Hope you are better soon. About the emotional stuff. I have been crying with surges lately (not normal for me) also I used to feel really angry (again not normal for me) for no reason... then it was fear ( very strange b/c i am a very logical thinker). I have been able to control myself better on my medication but it took about 2 months. I get very embarrassed b/c I am a person with a lot of self control... just wanted you to know you are not alone. When I first went to the ER they gave me ativan and told me to "just calm down". My husband really wanted to punch the nurse I was calm my body was not... ativan did nothing for me. beta blockers can block some of the adreal surges. I think you need better medical advice and for me a few drugs do help. kayjay

Maxine, I just wanted to remind you that your reaction could have been because you were in costco, not because of the D. I am always looking for a reason why I have a problem and I always seem to think of meds and or food causing the problems (b/c sometimes they do) but today my mom took me to the supermarket and I had a doozy of a spell out of the blue and have been horrible ever since. Your reaction sounds a bit like my adrenal surges. still- I wouln't try that one again not worth the risk. I just know I am always looking for cause = effect and often there is no relation. Hope you are feel better. I am taking a D in pill form and + 100% rda in my multi. Also laying in the sun and out of the wind when I can.

Shell, I would try them. When you have GI problems (for any reason) it can disrupt the balance in your gut of good/bad bacteria. It may help with some of your symptoms b/c by making your "gut" more healthy. I have taken them before (over the counter and they helped a little (after about a month) they seemed to give me a little more regularity. Although I still have "flares".

Julie- Sorry you are dealing with this. I had a thought... why don't you see your gyn. They are used to dealing with these problems and may have another take on it. I have bladder issues as well ( feel like I can't empty) But when I have an adrenal "storm". I have to go to the bathroom RIGHT away. Even before I have gone to the er thinking I was going to die. I stopped in the bathroom for a bowel movement (TMI ALSO) BTW congrats on your mileage! You should be proud!! Kayjay

Sorry for those of you who have hear me say this before. I drink a large v8 and a large g2 before I even try to get up. Then I stumble down stairs and have a small cup of coffee and a hot decaf tea. Most ams I have IBS problems but the V8 before I get up has really helped me not grey/ back out. My new thing after I get my little ones on the bus. I have been riding my recumbent bike for 5 to 7 min. Not the 45min hard core I used to do. I just am trying to get a little blood to my head. Mornings Stinks but not as bad as they used to. Hubby brings me my drinks with a straw about 40 min before I get up. If my children get up first they do it. I have a love/Hate relationship with v8.

Cat Lady, Please let me know what you find out. I first got ill when I wass 25 now I am 36. I describe my pain by saying it feels like I was tumbled in the dryer. You know that sound when you put sneakers in the dryer... I imagine I feel like those sneakers. I have trouble with pain killers and am already on many meds. I also had a past positive ana test and for a while Hopkins thought that I had lupus. Anyway- I am sorry for your pain and would love it if you would share what you learn. Thank you Kayjay

Regular Very Painful periods even as a teen. 2 children. Then bleeding between periods for last 6 years or so. Cyst removed at 35. Diagnosed with endometriosis. Still have bleeding between periods and regular HEAVY cycle. Ablation recommend for me but i didn't want to do it. Oh I 'm 36 started period around 13/14years old.

grey,,, try chester's for lunch... they really have the same stuff for less ( I got the meatloaf once for lunch) i agree it is pricey for dinner though. Also I thought that the Mexican place (right in town) but don't know the street was pretty gross. Are you seeing Dalene Bott- kitsler? Do you know what dr you are seeing? Mayo was such a help to me I hope you get a lot of help. Are you getting a sweat test? I was worried about that one but it was ok. Thinking good thoughts for you! Kayjay

Grey... So glad you are there! If you get a chance try Chesters. We had Lunch or Dinner there about 6 times. Glad you made it. Keep us posted!

I know I have posted about hair loss. Right now I am losing hundreds of hairs every day. I think it a reaction to the horrible spring I had - intense episodes over the course of months. I also take klonopin and I need it. Do any of you attribute hair loss to this drug? I take .05 at bedtime... very small amount. I would have to be really convinced that this was my problem to even consider stopping. Sorry If I am "beating a dead horse" ewww gross expression. But I really don't want to be bald at 36!

Hey all v8 does the same thing to me... I used to salt my water. Don't forget you need potassium also. V8 has this and I have to tell I really am starting to hate the stuff. but it helps me get out of bed every morning. Neuro at mayo recommend this. Also cup of soups are loaded with salt and other cr2p. I was told no more than 50% plain water.

Villen, do you have a heart rate/blood pressure monitor you can use? For me the only think that has helped is meds. I still do "breath work" because I believe it is good for us, but it did not slow my ehart during surges (beither did atavan b/c it was not "from stress"). Over time (not to worry you) your heart can become enlarged if it is always working too hard. It sounds like this is temporary for you so I wouldn't worry... But why put up with it if you can feel better? Nothing but meds stopped these surges for me. The ssri has helped after a few months and nadolol is the beta blocker I use. I had to try many. Atenelol was no good for me and lopressor/metoprolol made me too low. You might need to chanegey our med. Good luck to you

Villen, I have to take meds for this. A beta blocker, ssri and Klonopin. Also I drink a large glass of V8 ( really salty tomato juice) with a straw before I get up. I wait about 15-20 min. I get up slowly. Use the bathroom and lay back down to put on compression. Good luck to you... this is not good for your heart ( over time) so make sure you find something that will help you-Kayjay

Thank you all - I really am thankful for your imput. Also I forgot to ask... I am taking the brand name- my dr. wants me to take the name brand it is close to $90 a month b.c insurance won't pay for it. Do all of you take the name brand? Thank you so very much for your help. This medication has done wonders for me though the night I doun't get those panic surges. but stopping ativan was horrible so I was worried! Skyblu, II took ativan first and had a real problem with it after a few weeks. For some reason klopnopin is much better for me

Hello all, I have been taking Klonopin since May. I take it at bedtime ( the script says as needed) but I am worried about if I am harming myself long term. Should I even worry about becoming "hooked"? I have read that Klonopin is recommended for chronic fatigue syndrome- have that in the form of POTS! I do think Klonopin has stopped the nighttime surges I used to get when I turned over in bed. Will any of you tell me what you know or how long you have been on it. maybe I cam just worried about nothing...

Ok Nancy, After counting the number of hairs in the tub, I did a little web surfing. My hair falls out with little bulbs ( or club it might be called) at the root. This is supposedly caused by trauma, usually weeks or months after the stressor. I know before I was diagnosed this year I had several horrible flares and think that was my trigger. If so it will resolve in 6 to 9 months UGG! Look at the hair you have lost and see if there is a little scalp colored bulb at the end. If so, this is causeed after a stress when new hair pushes the old hair out (although I have yet to see new growth). If you don't see bulbs attached you may want to go to the dermatologist and have a biopsy done of your scalp. Sometimes hair loss is more of an autoimmune thing (although this tends to be "patchy"). I hope this stops soon (for all of us). IT IS SAD!