Victoria

When you have time, please read as much info as you can on Dr. Theodore Friedman's website: http://goodhormonehealth.com/ He is an excellent research scientist/endocrinologist. Most endos won't treat pituitary or adrenal issues unless labs/pituitary MRIs, etc. fit diagnostic criteria perfectly. They try to cram us into too small of a diagnostic box. Is the endo 100% sure it's a Rathke Cleft Cyst? Have you had a second opinion and has your son had more than one pituitary MRI?

Hmmmmmm. I have a very small heart.

Julie, Woo hoo is right! The difference is like night and day!!!! I've lasted most of the day on my feet with a steady HR/BP, no anxiousness, no sense of impending doom, no flushing or shakiness, and I'm also pretty much pain free. Astounding! I'm worn down this afternoon but most of my symptoms are just hovering on the fringe. This is unbelievable and the change is dramatic yet surreal to me. Will someone please pinch me? I'm also cautiously optimistic and I'm praying that I continue to improve. My doc has been brushing off almost everything I report to him lately and I'm a bit shy to ask right now. He acts a bit suspicious because he knows I've never given up searching the internet for answers. I've questioned whether or not I have so many things that he's put on the brakes with me quite a bit. What is the difference between albuterol and singulair as it pertains to MCAD? I'm trying to think of a way to approach him about it without rumpling his doctor feathers. BTW, can stridor (like croup) be caused by MCAD? When I'm really feeling bad I have episodes of stridor with a loud whistle in my upper airway — it sounds like it comes from my throat area. Thank goodness for your open minded allergist! It's so refreshing and heartwarming to hear of doctors like that, and to hear that you are making a comeback from the brink of death. I hope you continue to recover and you can count on me to keep you in my thoughts and prayers. This is scary and dangerous stuff. The worst part is I knew I was going to expire right under their stethoscopes because they couldn't find anything wrong with me. So many close calls. . . . Yes, fingers, toes and eyes crossed that this isn't a fluke and I continue to improve! Thank you so very much Julie. I'm so glad you shared information with me and I was receptive to it. Victoria

I took the claritin yesterday morning and benadryl last night without fallout. I'm trying to remain cautiously optimistic, but I must say I'm stunned at the way I'm feeling. My heart isn't pounding out of my chest, I'm not lightheaded/disoriented and I'm able to get up out of my chair and walk around without fear of sinking. The anxiousness is gone, I wasn't up voiding all night and I feel calm — a calmness that I haven't felt in decades. This sense of well being is amazing. Could I really have MCAD? After all I've been through I'm afraid to believe it. I'm going to try to snag some Zantac today, but I don't think my internist will write a scrip for singulair. The Atarax . . . is it Rx or OTC? Stunned and forever grateful, Victoria

Julie, I had no idea Zantac was an antihistamine! Do you know if it's okay to take Claritin in the morning and Benadryl at bedtime? I don't have any Zantac on hand. I've been sensitive to Benadryl in the past, but I did okay when they gave it to me in the hospital for pain not too long ago. I'm pretty desperate to try something, anything that would give me relief. Thank you so much for telling me I'm not a slow learner. I sure feel like I am, but it is a sharp learning curve. I have not even been diagnosed with POTS just yet, but based on my cardiology reports, dehydration, low blood volume, the one TTT I had in '02 or '03, neuropathy in my feet/lower legs and everything else, it sure seems like I may have finally hit the jackpot. These are the results of my autonomic testing: "Evidence of distal postganglionic sudomotor and cardiovagal/cardiovascular adrenergic impairment. QSART responses were reduced at the foot site (-99) and normal for other sites." I can't even believe what you said about your self-cleaning oven!!!!!!! OMGosh. I react to that chemical-like smell so horribly it isn't even funny. It feels like it permeates my brain! Everyone thinks I'm crazy, they don't smell anything and it doesn't make their heart race. I also have to avoid bleach, cleaning products and some perfumes. Particularly the old Avon ones. What you said about the blood shunting away from the finger and O2 sats makes complete sense. Could this also explain why nurses have a hard time getting my pulse? Why I have trouble with finger sticks for blood? I also have a Raynaud's like syndrome where my hands turn white, blue then red. Happens to my nose and feet also. My feet are freezing cold a lot of the time, even when we have 98 degree weather. Thank you from the bottom of my heart for the information! I feel like I'm finally, FINALLY going to make progress. You have no idea just how thankful I am. Grateful, Victoria

Thank you Julie, issie and Anna. My dog chewed up my peak flow meter a long time ago, but during episodes it isn't very good. At my worst I can't muster up enough strength or air flow to blow my nose. Bronchial spasm seems to make sense for some of my respiratory problems, but not all of them. This may sound strange, but all of my respiratory problems are worst after I've eaten too heavy of a meal (carbs), overexerted myself, had surgery or am under stress. I don't understand it. Julie, I didn't know Zantac contained an antihistamine. Thank you all so much for enlightening me. I'm still trying to feel my way around the information on the site. I'm a slow learner but I'm beginning to understand it in little chunks. Sure wish I could get this brain fogged mind of mine to work better.

Julie, For some reason I didn't get notification of your post so I didn't see it. Thank you so much for the wealth of information. Yes, I am in a very terrorizing and agonizing place. Honestly? If I don't get hope of relief soon I'd simply rather not live. I wouldn't dream of taking my own life, but I do pray that I just pass quietly in my sleep. I've reached the point where it's too much for me to bear. I'm not taking a calcium channel blocker. My cardio prescribed it years ago and it was intolerable, so I've been flying solo with the cardiac issues. He discussed ablation, but I put the brakes on that one as well. Oh, and you're correct. I'm not officially diagnosed with POTS, let alone MCAD. I had a brochure about POTS (from this site) sent to my internist, and his nurse told me she threw it away because it was in brochure form. I wish I could have one mailed directly to me so that we can get it to him. I just started taking Claritin in the a.m. for allergy-URI symptoms. Can you please explain what H-1 and H-2 are and how they relate to this disorder? I am unable to take Benadryl as it stirs up my symptoms horribly. It keeps me awake and in fight or flight mode for some reason. Is there something else I can try? Albuterol, novacaine and epinephrine seem to make my symptoms worse. I've had many prolonged "storms" that began in the dental chair, so I've instinctively known to avoid those. Is there something else I might try? Or is it possible that I may experience a worsening of symptoms before they got better? This is so confusing to me. I used to use an albuterol inhaler for "asthma" like symptoms, but now realize that I always had POTS symptoms with my attacks. Do others cough, rattle, wheeze and squeak when going through a really bad patch, or is it just me? If so, what is the significance? The pulse oximetery(s) have been accurate, but I should have clarified, I don't have one at home. I can tell when my O2 gets too low, and the times when I was in a critical care unit (locally) they turned off the alarms on my cardiac monitor because it was going off constantly. They claimed that the monitors were old and unreliable, but I've had the same thing happen in other facilities. Big sigh. I had a sleep study at Mayo and the results were that I should be on mechanical ventilation. The sleep study doc there called it a technical error because they couldn't find a cause for the respiratory problems. He said he'd never seen such strange results in his career before. Please understand I'm not Mayo bashing, I just had a bad experience there that created a non-resolution of my health care. It still is, because many doctors believe if Mayo can't find the problem then it must not exist. Anyway, I've obviously long since sought out another sleep study clinic and have had better luck, but my machine needs tweaked, I need a different machine or I need to be on bipap. Mayo also said my PFTs were so bad that I needed a lung transplant/lung reduction surgery. They retracted it months later because my PFTs returned to normal and they couldn't come up with a logical explanation. Personally, I think it was my ANS hopping all around and they just didn't nail it. I've been to many pulmonologists and they can't figure me out. I even had a lung biopsy/bronchoscopy that was normal. I also have low blood volume or hypovolemia frequently. I recently had breast reconstruction surgery post breast cancer and I was in dire straits again with hypovolemia and low sodium. Surgeries affect me for months afterward, but this one wasn't so bad. I take magnesium and sodium chloride tablets, and it has helped somewhat. I also must stay hydrated and drink Powerade Zero to do that. It is quite a trick to stay hydrated in the hot and humid summer months here. Julie, I didn't mean to drone on and have a big pity party at your expense, but it does feel good to tell a bit of what I've experienced to someone who understands. Someone whose been there. Thank you so very much for all of the tips and for the heartfelt encouragement. Most days I just sit or lie down watching the seconds go by, feeling very helpless. Other days are not as bad and I can walk a little bit, and even drive. If you can think of a replacement for the Benadryl and Albuterol; or if you think my body would eventually adjust, will you please let me know? With heartfelt thanks, Victoria P.S. I read it once and now I can't find it. Where is the Hyper Pots/MCAD research from Vanderbilt?

Thank you so much for the great info. I do have some cervical cord compression, but it's supposedly benign. It wouldn't explain having symptoms for this long, though. Hmmmmm. I do have an awfully long neck and it's prone to injury. I'm going to check out the EDNF website tomorrow when I'm stronger. And I'm going to go book hunting next pay day. Knowledge is power. Thanks so much for the enlightenment and passing on the good reads. I truly appreciate your help.

Oh, issie. I'm so sorry you also have low oxygen and the breathing disorder. My sleep study doc was going to add oxygen then decided to see how I did without it. Sometimes I do okay, other times I don't, but I know the low O2 is bad. I set off apnea monitors during the daytime when I'm just sitting. My body decides to stop breathing. What you said about turning over in bed and having a wild pulse? Same thing with me. It starts in before I'm completely turned over in bed and I get all breathless. Oye! I'm speculating that I have Hyperadrenergic POTS with MCAD, and I shouldn't do that. But realistically speaking, everything else has been ruled out. I already know I have a borderline positive TTT, increased norepinephrine, dopamine and pheochromocytoma-like symptoms. Gosh, I can't wait to get to Dr. Grubb. I rarely take OTC meds because my body doesn't tolerate them well. Benadryl is a good example. It keeps me awake (wired and sweating) all night long and my heart just pounds away. I started taking Claritin 5 days ago at my internist's suggestion for a URI. Now I'm wondering if I should stop taking it. If it isn't somehow wreaking havoc with my ANS? You are right about it being complex and complicated. Yes, here's to hoping for quicker diagnostics, more answers and better treatment. Thanks so much issie. You're a dear.

Thanks for the tip on the book! I'll start saving so I get get a copy. 60-80% definitely a lot of POTS peeps with hypermobility.

I have another endoscopy and colonoscopy coming up this month. I'll ask about it. Thank you very much for the info. Does your mom also have POTS symptoms?

Thanks so much, it is terrifying. Belly breathing, that's what I do, too. My body loses the impulse to breathe on it's own somehow. Big spans between each breath, so I lie awake belly breathing. The big spans between breaths set off my CPAP and it kicks in constantly as it tries to breathe for me. But it isn't powerful enough. . . .

I apologize for burning up the forum with all of my recent questions. I had a pretty good day yesterday and was able to be on my feet much longer than usual. I was exhausted, but I felt pretty decent until I crawled into bed. As soon as I laid down on the pillow I struggled to breathe most of the night and CPAP wasn't enough to keep me breathing regularly or normally. My body literally forgets to breathe at a normal rate/rhythm! I have to consciously take over the breathing manually. It is completely terrifying when this happens and it wouldn't be an exaggeration to say I'm near death during these times. I wasn't always this bad, the disorder has had an ugly progression. The other thing I've noticed is that I can sometimes feel so-so as long as I'm moving, but the second I stop everything breaks loose and my system goes completely haywire. What's up with that? Is it the norepinephrine at play wreaking havoc with my ANS? Can any hypers relate? I've been rushed to the ED many times during nights like this; and although they find abnormalities, no one has been able to pinpoint the cause. Also, is there anything I can do to support my respiratory system at times like this? Out of all my symptoms, this one is by far the scariest. P.S. My oxygen levels drop down in the 70s and 80s frequently, but no true cause has been found to date.

Thank you issie! I don't want to bombard his office with records, but I don't want to leave out important ones, either. I didn't know EDS could cause POTS????

I get twitching and muscle cramps and it can be anything from annoying to very painful. Mine is worst when I'm not hydrated enough. Are you drinking enough? Has the weather turned warmer making you more prone to dehydration? You also may want to have your calcium checked. Mine runs low. But I'm a newbie, so I'm hoping someone else comes along with advice.

I was diagnosed with Ehlers Danlos at Mayo. I was poking around the forum and it looks like POTS may be common in people with EDS? Is this true? If so, I'm assuming Dr. Grubb would want that information when I fax my records to him? Thanks bunches.

Zoiks, Susan! That's a boatload of money for the Enbrel. I'm so sorry you had to stop taking it. :-( I've been going to the U of I dentistry and they recommended I use "Saliva Sure" lozenges (Scandinavian Formulas) and they help quite a bit. I get them from the dental pharmacy, but the problem is I run out of them pretty quickly. $7.00 for a purse sized box of 90. I think they work much better than the sugar free candies because they contain Xylitol and stimulate saliva. scandinavianformulas.com Yeah, I'm also a mouth breather also, thus the full face mask with my CPAP. Ugh. I've had quite a few caries over the past several years despite staying sugar free. I'm going to ask about an Rx for the fluoride toothpaste, thanks for the suggestion. Lol about your lip biopsy comment! Did you get in line for one? I have plugs in my eyes, but that's as far as I was willing to go. You hang in there, too and keep that mouth moist! Victoria

Thank you so much! This helps tremendously I will be going to see them. Now, to find the records they need. This will be the most daunting task. Thank you so very much!

No, I haven't. If I could get anyone to do it I would. When they hear I've had the same symptoms for 29 years with no resolution I typically get the eye roll. The Mast Cell Activation video on youtube.com mentioned flushing and watery diarrhea. But if carcinoid syndrome, what testing would need to be done to rule it out? Thanks!

Hi Susan, I haven't had the lip biopsy either, and I don't really care to. Yikes! Sounds like your diagnosis is definitely in the bag with RH and pernicious anemia. I'm sorry you have so many health issues. My rheumy prescribed Evoxac, but our insurance doesn't cover it well and it would cost me $75 out-of-pocket per month. Darnit, why does everything have to boil down to money? I am taking the generic for Salagen, but it just doesn't do much for me. My CPAP also dries out my mouth at night even though it has a humidifier on it. Maybe I should check again and see if they've come out with a generic for Evoxac. Thanks for replying, I really appreciate hearing from you.

Long QT is a dangerous dangerous rhythm of the heart. It will be nice if he can rule out Brugada. Keep us posted, will you? No, no surprise about the tachycardia. Yuck. Not fun. I have the same experiences at hospitals. They leave you lie on a gurney and symptoms can stabilize by the time they get around to you. Yeah, imagine how positional changes could affect you in gym class, lol! I'm sorry you have migraines. They're brutal. I used to have them for extended periods of time, but that's one of my symptoms that's gotten better with age. I don't know why, but I have to wonder about hormonal changes and POTS. Hope someone calls me out on this one if I'm wrong. You must have passed out during your TTT? Your case of POTS is pretty cut and dried then. I didn't pass the TTT but I didn't flunk it either. I have distal postganglionic sudomotor and cardiovagal/cardiovascular adrenergic impairment. I don't completely understand what all this means other than it wasn't investigated any further. I'm relieved to hear some of you have a good team of doctors. It does my heart good and gives me hope. Take care.

I watched the video and I don't think I have that same type of rash, but my 14-year-old does. It worsens after he's been emotional or if he gets too hot. Yikes! Mayo said my rash is folliculitis. But I do have most of the other symptoms. For instance, I flush, have GI pain, chest pain, have horrid episodes of watery diarrhea and I'm completely alcohol intolerant. I can't even take a sip of wine without getting seriously ill. Not that I want to imbibe, but I've always wondered why alcohol affects me like that. Could this be it? My internist won't help — he doesn't quite get what I've been trying to explain to him and I think he's frustrated with me. Hubby isn't happy with me planning to see yet another doctor because we can't afford it. He'll get used to the idea in time, I guess. Thanks for this, Sarah. Some of the puzzles are fitting together nicely. All the best, Victoria

Sandy, thank you so much for this informative post. Dr. Grubbs and Beverly sound like outstanding clinicians ad real human beings. I've waited this long for a diagnosis, so an hour or two in a waiting room won't kill me as long as I have somewhere to lie down. I can always resort to lying or the floor if need be. Thanks again for this info. I don't know what I'd do without all of you. Just curious, is your Brugada Syndrome the cause of your POTS?

Thank you so much! This is such good news to hear.

Dr. Grubb can't see me for a year. Staff said the nurse practitioner that works with him could possibly see me in 3 months. Do you think I'd make any headway with the NP, or would you go elsewhere? I don't know what to do. All I know is I can't hit another brick wall. Would those of you who see Dr. Grubb let me know how you think I'd fare with his NP? I'm really desperate on this end, I need some type of resolution.