kayjay

So I saw my doctor today and he said not to change anything... if I want to back off of the klonopin I need to break the pills in half for two weeks and then email him. I guess I need to get over this issue. Other people act goofy sometimes too. I tend to blame every mistake I make on POTS or the drugs. My dad made me feel better when he left a 1/2 gallon of ice cream in the back of the car for 2 days! It is not just us! I do want to share with everyone ( although I have before ) I have very hyper pots ( misdiagnosed with a pheo)... and cymbalta is helping me more than lexapro ever did. That old snri vs. ssri thing. After being "sick" for so long... it is great to go to a doctor every 3 months who can notice the improvement that I don't always see. THANK YOU !!!

Bella... a big hug to you! I wonder if Sue is on to something. I know nicotine gum makes your blood pressure go up. I felt so much better chewing it ( never smoked) but when I was teaching I had so much trouble thinking... I knew what nicotine did because I did a project in school on lung cancer. I only told my mom and my husband that I did this. I only did it when I worked. Now I have been well enough to drive. When I have to drive for more then 10-15 min... I chew that gum. Maybe this fish oil means other things are going to have to be adjusted. Also I just watched a dr. oz today and many drugs interact with food. You know your body and you know what had changed. I think... trust your instincts! I hope you get answers. I'm thinking of you. Just remind your docs( if you need too ) that our bodies sometimes do the opposite of normal... like most people are not supposed to have much salt. Keep us posted! -k

I really struggle with this. I get dizzy from bending.... from taking yoga I think for me it sometimes has to do with the position of my head. For example sometimes I can bend over if I don't hang my head upside down. This may sound a little silly but I had to help my husband clean out his grandmother's apartment after she died. I kept her "reacher" thing... I don't know what it is called... but it has a trigger and extends your reach. If I can't pick something up with my feet... I use it. Also I used to vomit (gross I know) from bending and moving around to quickly. It does help to move more slowly.

Thanks so much for your input and advice. I did not stop the klonpin but I did stop the cymbalta... until i woke up last night with a horrible migraine ( haven't had one for a few months). I took 1/2 a cymbalta dose in the middle of the night. Anyway I told my husband I think I like my drugs . I see my doctor on wednesday so I will ask him about it. I hate taking these drugs but maybe I need to "get over myself". As always I am thankful for the kindness and information that you fellow "potsies" share!

So now that I am gluten free I want to cut back on my meds. Like many of you I just hate taking meds... even though I know I have needed them. I take cymbalta for my fibromyalga pain. I am hoping that the pain was really because I can't have gluten. I am weaning myself off of it but having a little trouble. I just feel mentally off... maybe a little sad, worried etc. I did not tell my doctor I am doing this.. I see him on the 20th and thought I'd just be off of the med by then. Additionally I am cutting back on my klonopin... slowly. I found that I was getting out of bed at night and not remembering a thing. Freaks me out. Any advice is welcome.

Sounds like my "adrenal surges" sorry that you have this... very scary. I also am taking klonopin at bedtime but a small does of a betablocker (nadolol) Has helped. It somehow blocks the adrenaline. I don't know of any natural help. I had to take meds. I currently am weaning off the klonopin to see if I still need it. but i think I'll be on a low dose beta blocker for life. On thing to consider with meds is to not give up on them too soon. It took me MONTHS to get used to the beta blocker but I know I need it. Best wishes,

Bumping this up. i know we both posted about gluten free. I have been gluten free for a few months now and although it is hard.... I am way better. Thinking about going off of cymbalta. Hope you are well catlady. are you still gluten free?

Jay.. I am very hyper pots... will test positive for Pheo with a 24 hour urine ( but don't have one... a tumor I mean). Though blood work Mayo clinic found that I am highly hyperadernergic. I also have ( had ) high blood pressure. sometimes like 160/120... anyway it seems counter intuitive ... but we are not doctors. I am on Cymbalta (snri) and doing much better then i did on Lexapro. It has not raised my BP. I also take a small dose of a beta blocker. to give you an idea unmedicated my hr would go from the 50's sitting to 170's standing. I also take birth control pills which have not raised my blood pressure. I would consider trying the meds. It seems to not make sense but Mayo clinic uses them in hyper people and I am sooo much better! whatever you decide... good luck.

Hope you are feeling better. To me it sounds like a panic attack. I have had these. When it is a POTS thing for me my hr is about 170... my bp is sky high and I have to rush to the bathroom. I think now my body has learned to panic and sometimes I have "panic" without the drastic vitals. I tell my self that it is not "Real"... i know that panic attacks are "real" what i mean is I tell myself that I am not in danger and i try to relax. I also will take a bath in epson salts or drink a small glass of red wine... yes I have even done this before noon. . best wishes... I know this is a horrible, scary thing! Also when I have i have "real" adrenal problems, I flush and hear buzzing like Macks mom.. or I turn Ghost white... even my lips. When I have a panic attack this does not happen.

DO not take YAZ of a pill that messes with your potassium levels..... I ended up in the hospital. I now take kariva ( mayo clinic put me on this one. I take it so I only have a period every 3rd month. It has really helped me. Good luck to you.

Good for you! I have two children 20 months apart and I was very sick (bed rest) while pregnant and then after they were born sicker...even sent to NIH.. Misdiagnosed with pheo. we really thought I was dying. I was undiagnosed for 10-11 years... anyway... you can get though it and it is worth it. My children don't recall me being sick when they were small... make sure you have a play pen. It is so important that they have a safe place. Put fun toys in the pen that they don't play with outside of the "pen". Don't be too hard on yourself. I think all moms have "mommy guilt". Nap when you can. Eat right. Enjoy this stage of your life! Now I find that my children being so close in age is a blessing. They are only 1 yr apart in school and like many of the same things. I did have 2 in diapers for a short time but I think things are harder when there is a big age difference. My two even have the same bed time. Focus on what you can offer your children and not what you think you "should" do. My children are very fun, kind, and mature for their age because of what our family has had to deal with. Also on weekend my husband would get up and feed the baby to give me a break. It really did help. best wishes

YEAH!!!!!! Hope you just keep doing better and better! Thanks for sharing your good news!

I had my first Tilt table test at lankenau. I saw maribel hernandez. She does not treat me but she heleped me get to Mayo. I see a general internist there named David Cohen. He has been wonderful to me.

Doc at mayo would not prescribe but I am hyper pots. he said these drugs raise blood pressure and might be hard on the liver... wish I could take it for my fatigue. Do any of you have high blood pressure from hyper POTS and take this?

YES. Sometimes I have a bucket with me.... gross. The only thing that seems to help me is being still. If I feel nauseated and continue to move around... I will vomit. Sorry I know it stinks. I used to vomit sometimes after setting up my classroom in the morning. Now I think it was from rushing around and all of the bending over I did.

Just adding my 2 cents. Mayo diagnosed me with Hyper pots. They used a plasma norep. test. They have you rest and compare that with your levels after standing up ( walking or whatever) for a few moments. My urine levels for catecholamines ( does this have a spell check?) are so high that I was misdiagnosed with pheochomacytoma. I believe that with hyper pots sweating and shortness of breath are very common. I know I can't do jumping jacks to save my life. I wonder if regular pots people have horrible shortness of breath? Also I had to try many betas. I now do ok with nadolol and klonopin only at bedtime. It took months to adjust to the nadolol. I take cymbalta during the day. If I have to drive I chew nicotine gum (no I have never smoked). I don't know if this is a bad idea but it really helps me and I have 2 young children to care for. My heart rate was sometimes in the 40's ( during the day) no idea what it is at night... but over time I think you get used to the low hr or it gets better... not sure.

My son has struggled with these for years. Have you tried the NeilMed Sinus Rinses? He has found these helpful. Cannot say enough about the Neil med. My whole family uses it and no more infections! My 10 yr old son was sick often. no more. Also my doc told me you can use tap water- very cost effective. If you can drink the water you can shoot it up you nose!

Ok I know I already told you what is helping but I forgot to add that swimming helps as much as yoga. No matter how crappy I feel I feel a little better after a swim. I also soak in epsom salts. I don't know if it is mental of not but an epsom bath seems to help me at bed time.

What was the question? HA HA You are in good company!

"While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not. While there are many different symptoms involved, it is primarily defined by a rise of 30bpm or more within ten minutes of standing up from a supine position. One other possibility is Pheochromocytoma, which mimics many POTS symptoms, but not the postural tachycardia. You can learn more about it by searching the forum for "pheo"." Hi ... sorry you are not well but I wanted to let you know that I have hyper pots and my heart rate did this at night before I was on meds. I tested positive for Pheo with 24 hr urine tests 4 times... was sent to Johns Hopkins and then NIH and I do not have a pheo... turning over in bed set things off for me... I thought I had breathing problems! It sounds to me as though you might have hyper POTS. If you get tested for Pheo make sure that they go by a supine plasma (blood) test. I am living proof that a 24 hr urine is only a screen test! best wishes to you

I have similar pain. My hands hurt more than my feet. My feet will hurt from standing. I do not have arthritis. I was told that it is fibromyalgia. I explained to my doctor that I feel as if I was tumbled dry in the dryer... just all beat up. My hands hurt so much I once had a dream that i was a piano composer and I was banging on the key board. I also have the muscle weakness esp with the with stairs but I think it is from the pots. Lyrica helped me with the pain. Cymbalta helps somewhat. I went off of gluten and found after a few months my pain was better. Yesterday I ate pasta at lunch and now my hands, feet, elbows, knees, shoulders are really hurting. My feet used to hurt so much I thought that it was from the tile floor in out house. Now I wear rocker-bottom shoes in the house and sometime fit-flops. I always wear rocker bottom shoes if I have to shop - now at least they are less geeky. Don't give up. I now am having more days with less pain but it took a lot of trial and error to even figure out what might help. I still have pain but it is less intense and less frequent. If your joints are swollen I would follow up with a doc. Mine are not. All of my pain seems to be nerve pain. Good luck to you. Also I forgot to add that when I can I do an easy yoga dvd. I will start in a lot of pain but it seems to give me relief when I am done.

Yes and sometimes all day! The best advice I have is to drink a big V8 before getting out of bed. ( Mayo doc told me this as I would "gray out" on my way to the bathroom). V8 has salt and potassium so it is good for potsys Thankfully my husband usually remembers to get me one. Huge help. I also no long drink coffee. I seem to do better with green tea thought the AM-

No new meds... no sugar, coffee or anything else that could explain it. Thanks all for your help. I feel a bit better knowing that this has happened to others. I see my local doctor on wednesday... I'll ask him about it.

how sweet are you? I have been thinking of you and wondering about the surgery thing. Mayo was helpful but I came home a mess! I asked about something to help with the horrible fatigue and was told that hyper POTS people should not take adderal etc. I hope you are doing better. I am a horrible "friend" but I do think about and pray for so many of you. Just don't get on the phone or computer to show it. From mayo I learned that my doc. recommends nadolol, klonopin, and cymbalta if you have pain. he would not give me something like lexapro unless I was depressed. I think my level of depression is normal?! We stayed at the double tree - about 160 a night... but super nice. We (I)tried to pretend it was a vacation... but then they gave me a tilt table test!

Hello all, I hope you are well. I have not been on the computer for a while so I feel a little out of touch. I just got back from the Mayo Clinic in rochester. This visit was more helpful than my first ...but they tested me again and after flying home I had a bad flare. Two days ago I was feeling better and I took my children out to lunch. It was a pretty healthy day... but that night I was laying in bed reading and I had a new symptom. I felt my heart take off, felt my face burn, heard rushing in my ears, and lost my sight. I have lost my vision with almost fainting. THIS was not like that at all. I was not moving and had been laying down for about 20 min. Does anyone have any ideas? I wish this happened before I went to mayo. Now I am afraid to drive. Any advise would be welcomed! Thank you Kayjay