kayjay

Bella- I am praying for the both of you. I'm so sad... I can tell that you are a sweetie. Maybe knowing what you have gone though will give her courage to face her own struggles- with love- kayjay

Hi... By now most of you know I have H-POTS among other problems, fibromyagia, allergies, migranes. etc I have had "digestive" issues for years. I assumed that my chronic bloating was from endometriosis... but I had surgery for that. I know I have trouble with dairy so I avoid it. Do many of you have celiac? I am wondering if it is not IBS. Any insight? Thanks

As usual I enjoy what I learn from so many of you. I have not been to therapy... maybe I don't want to get in touch with my "crazy side" I know it is there but I am a private reserved person and feel the need to cling to that. I do want to ask a question... have any of you had therapy with your family members? Is so was it helpful? Right now I am hurt by my husband's frustration with me. he is super healthy and although he tries (sometimes) and is a really great man... my illness is a huge stresser on his life (and our relationship). He doesn't "get it". I often feel very useless but mostly I worry about how my disability impacted my relationships. would therapy be helpful to improve relationships with others?

I also had crazy high BP... still do sometimes.. but one I would love to ask Lenna if her niece got really short of breath walking up stairs? No matter how fit I was ...Stairs made me short of breath. I wonder if this happens if you have a pheo? I was short of breath often because of how fast my heart was beating... but even when I felt pretty good ... stairs (and jumping jacks) were too much for me.

Hi- I have had 3 ( or 4)positive Pheo tests (24 hour urine) done at Johns Hopkins. I have never had a negative urine test. The Doctor I saw there was 100% sure that I had a pheo and sent me to NIH. I remember where I was standing when he told me that it could not be anything else. NIH could not find anything and Johns Hopkins thought the tumor was just too small too see. Fast forward 8 years... I do not have Pheo I have hyper POTS. The symptoms are too similar to tell the difference. you can have postural tachy with pheochomacytoma and you can even faint. I was told about a patient who passed out when she urinated because the tumor was on her bladder. With pheo you will have unexplained high blood pressure... like I do with hyper pots. I have every symptom of pheo... but I don't have it. I think a PET scan is what convinced the Docs at NIH that I did not have a pheo. Also If your resting blood tests are negative for pheo that helps to rule it out. Good luck... I know that this is not a good answer... but I do know that endos are the docs that have been so sure that I had pheo.

Erik- Just wanted to ease your mind about the sexually transmitted CFS. I like Reen do not carry the diagnosis of CFS but with a different doctor I would. I have IBS, POTS, Fribro. I really believe that it is an auto immune or allergy type problem... not a "blood' disease. I just know in my case I could not have gotten it from sexual relations... also my husband and children are all (thankfully) super healthy.- Although I don't know if I have this virus or not I am such a germ freak I never even drank after other people. I suspect for many of us there may be a genetic tendency with an environmental trigger. of course I have no reason to think this way except for my suspicions about my own case. Funny thing for me I gave blood once in high school and felt so horrible... I never did it again and I have always felt a little guilty thinking that I should give blood because I assumed my blood was "good". HA HA - we hopefully this question will be answered soon.

Now that is really interesting! Is this a neuro that suggested? PLEASE let me know how is goes. Can you tell me who your daughter will see at Mayo? Wonder what the controversy among Docs is... could be dependent on the training of the "manipulator"? I wonder if it matters what the "source" of your POTS is? Also Mack's Mom- I think Very highly of Dr. Rowe... he sent me info by email and is a kind caring doc. I am sad he doesn't treat 37 year olds ! Is there someone at Hopkins that does this?

Chaos- My only point was buyer "beware" ...as you said it is not a cure... I really didn't need the history lesson... but thanks anyway some of this cranial manipulation stuff reminds me of the Four Humors... you should wash your hands though! I know on this forum it is ok to SHARE info. I was repeating what the doctor at the MAYO CLINIC told me. Sometimes words don't come across clearly when written. Mountain Girl- I hope you know that I am for what ever works for you! I want all of us to do better... I was only mentioning what my Doctor said because of the cost. He also felt that in the wrong hands more harm could be done. Reen seems to really know what she is talking about. Noreen thanks for clarifying - that was good info and new to me! Hope it helps you feel better.

Hope u are doing better with this. I have not had this side effect at all...but I am also taking Cymbalta for Fibro pain. My issues with mestnion have been worse IBS. That is starting to settle. Can you or do you take anything for pain? I am taking 30mg 2x's a day. I wonder if some kind of pain med (advil, asprin etc) could help you be more comfortable while you try this new med. I can't take many over the counter pain meds due to allergies... but I can take children's asprin. I wonder if that would be ok for you to try. FEEL BETTER!

Oh sorry one more thought. Could you have endometriosis? You mentioned that it is worse before your period. It is not uncommon for endometriosis to attach to your bladder.

I have a similar problem but it is much better now that I am on my "POTS" meds. Sorry you are dealing with this. I used to fear I would wet the bed or something. Maybe changing your meds would help? I used to wake up many times (4=) every night feeling like I had to pee. I think the Klonopin and beta blocker may have helped me? hope you figure this out and are better soon! keep us posted!

I have mbt boots, sneakers and sandals. I like my sketchers just as much and they were much cheeper. I wear fit flops at home ( where I spend most of my time ) and wear the others when I go out. These shoes help me so much and I have tons of "comfortable" shoes from teaching Kindergarten... but I the above mentioned shoes are best for us "potsy" people...IMO.

I am happy to hear about anything that helps people feel better. I know massages are helpful to me. I hurt more at first then feel a little better. My doctor told me that cranial manipulation is "bunk". I never tried it but by many it is considered "quackery". - best of luck to you.

That sounds pretty good to me. Hopefully this was a confidence booster as well. Yea Mack!

MM- You really have me thinking. Mcad fits for me. I have always had "over the top" allergic reations but not much in my blood work to show for it. Can you let me know where you got diagnosed and please let me know what tests I should ask for. I know you have given this info before but I am dense? Also would I have a lot of bathroom problems with MCAD? Would you have celiac... or just GI upset. Thank you for all of your help you know a lot.

thanks so much for getting back to me. DINET has the nicest people... I guess we have a lot of character from all of the suffering we do an Anyway... I do have allergies and I have had anaphlactic(misspelled) reactions with flushing after medications so maybe this was an allergy? I don have hives often although my face does turn red. I looke up the mentioned website. I do have the bladder,IBS and nausea problems. I started to wonder if I mast cell issues becasue the beta blocker has mess up hy hear rhythm. I have palpitations more then ever even though my hr is much lower. It just seems like I have something more then POTS because I am so sick. I also have been wondering if I have celiac and am thinking about asking to be tested. I have "bathroom" issues every day and was told I have IBS but what is IBS... you know what I mean? I would love to know what the underlying cause of my POTS is because 11 years into this I am no better... actually worse . Thanks again for being kind enough to respond.... happy Easter too.

Hi- I know some of you have mast cell... how were you diagnosed? I was told I have H-pots but I am really not getting better. I have had flushing- once after taking a med... I just turned bright red all of a sudden. Any info is helpful. I have read online and am not really "getting" it. Just wondering if I should be on a beta blocker. If you have flushing is it a rare or common problem? Thank you

Hi- I do have H-pots and am taking 30mgs 2x's a day...but my bp has been high. I am not sure what this drug is supposed tp do for us. I think I am less tired but not feeling "better". With the BP swing I am having headaches are more of a problem. Anyone have high bp on this drug? Hope you are doing well Babette!

Hi... not sure yet how I am doing. My IBS was bad when I started and I am still having problems with that. I can't say if I am better or not on it. I am wondering what some of these drugs are supposed to do anyway? I did sleep on a slant and woke up in the middle of the night with a horrible migrane. Again I wonder why docs say to do that when it does not seem to work for anyone. I hope you get positive results with the Mestinon...I just don't know what to think about it right now... best wishes... keep us posted!

I also have terrible allergies. I do not take meds for them. I use neilmed sinus rinse. I also don't open the windows in my bedroom at certain times of the year. I will bathe and have my husband shower before I get in bed. I cannot say enough about the sinus rinse. It is not expensive and it is easy to use. I used to get ear and sinus infections all of the time. Now they are pretty rare. Feel free to PM me if you need more info and I will look it up for you-feel better.

I am with Sara on this one! Took my first trip (hopefully only) trip in an abulance after taking this! Then I had hives for almost a month. I had my first really horrible panic surge. I was with my parents and told them both I love you and I think I am going to die. I know it sounds silly but if you look this class of drugs up on wiki- it is not rare to have a problem with them.

Babette, I am doing pretty well with it and I have had problems with all kinds of meds. I did more today without even thinking about it. Hope you are doing well. I also really want to know how many h-POTS people take this med.

Bella, My doc said don't worry about what you eat. I know you can read things about certain nuts etc. It is important that the container has hydrocloric acid (HCL) I know my spelling is off but my conputer is messed up and I have no cursor. Anyway you do need to put the sample in the fridge (gross I know) or on ice. Also you discard the first "sample" and that is your start time. For me the big difference between H-Pots and pheo was moving. A tilt test early on would have have made it clear that I do not have pheo. My h-pots is just severe so Johns hopkins and NIH thought that I had pheo. Again the blood test is much more accurate.

I started last night. 30mg in the am and 30 in the pm. Funny thing is I was less sick to my stomach today! Also I think walking up the stairs was easier. We shall see. Hope you are doing well. Keep me posted!

Hi... sorry I don't have numbers for you but I have had 3 (or 4) positive urine tests for pheochomacytoma. But I don't have it. The supine (laying down) plasma test is much more accurate. My blood tests are negitive for pheo but high enough to be hyperadergenic pots. Sorry i cannot be more helpful but a dr at Johns hopkins told me that I definitly had a pheo ...it was just two small to be seen. He was wrong... I have Dysautonomia. Good luck to you an keep us posted. Even if you do have a pheo ...removal would cure you. I know it is scary though.