melly4

I'm so glad you went to the dr., and you'll be free from worry about these things when they are removed. Just go get a checkup every year with your dermatologist to make sure nothing else starts looking suspicious. Good luck, Melly

First of all, he works for you; you don't work for him!! He gets paid for seeing, listening, diagnosing, and treating you. Obviously, he is doing none of these things for you. Time to find someone who will. And I know it's easier said than done, but there are caring docs out there. You have to go find them sometimes. Secondly, you are not a whiner if you are in pain and your medical "professional" won't help you. I don't know what the hospitals are like where you are, but here, every person, young or old, is entitled to proper pain management. If your doctor does not address your pain management issues, this could be construed as medical malpractice. I'm sorry you went through this, and I hope that you will consider finding another doctor who will help you with your suffering. Don't let one bad apple make you feel like you are a whiner. You don't deserve to hurt. Melly

Thank you all for your replies. I feel a little calmer. I will be having the test done here in Macon, GA. I will have an opportunity to speak to my doctor before the test, as I have a follow-up with him prior to the test. I'll address my concerns then. I did the "poor man's TTT" on myself and my 13-yr-old yesterday and today. My heart rate went up over 30 bpm at 10 min. of being upright. My son's went up over 30 bpm at 45 min. of being upright. So, I'm hoping that isuprel won't be needed for the test?! Thanks again for sharing your knowledge on this test and for the advice. I'll quit being a baby about this. Melly

Hi, everyone. I am supposed to have the tilt table test in about 4-6 weeks. I was reading on this site about how the test was administered, and noticed that isuprel was given IV during the second part of the test. I'm terrified of going through that. I absolutely cannot have epinephrine or any substance that mimics it given to me. I faint. I know that sounds stupid, because that is what they are looking for, but I had a really bad episode in the dentist's office related to epi in the novacaine, where I fainted in the chair. What was so bad was that I was left alone in the room while they were working on another patient, and I have never gotten over it. I have gone through great lengths to make sure any procedure that I have had requiring a numbing agent being given is free of epi. Like I said, I know I'm being silly, because the whole point of this test is to see if mild stressors to my nervous system will make me have syncope, but I can tell them ahead of time that I definitely will faint when given the isuprel. Sorry, I just needed to vent my fears. My heart rate is going up just thinking about it!! Melly

I hope you and your husband are feeling better. I know it's hard having to take care of someone else when you are feeling so bad yourself. I have four kids, one with dysautonomia, one with possible kidney issues, and one facing her third surgery in a year. I'm thankful my baby is healthy. I'm sorry you have been through so much. Please hang in there and let us know how both of you are doing. God bless, Melly

Lois, I'm sorry you are feeling so frustrated right now, and you have every right to vent. I will keep you in my thoughts and prayers as for your breast cancer situation. I can't begin to imagine how frightened you are and how rough the treatments are. I think the people here on the board will be strong for you as you go through this. Vent away, and I'll think positive thoughts for you that you are going to beat the cancer. Keep us posted. Melly

I'm glad they've seen where the screwed up with you, but I can only imagine how angry you are right now that they had to put you through so much anguish. I, too, have been given the "family loss, thus anxiety disorder" diagnosis, because the GP noted that I have had 4 miscarriages. My oldest son had his tachy and BP swings blamed on peer pressure and social anxiety because his stupid doc saw that he was homeschooled. He failed to ask about my son's other activities, like the fact that he is very involved in his church youth group,that he takes taekwondo 6 days a week, teaching the younger kids 3 days a week, and participating in huge tournaments in front of large groups of people. My son has no social dysfunction whatsoever. Very laid back, until his symptoms unnerve him. I don't mean to doctor-bash, but some docs cannot see beyond their original perception of somebody or something, and they'll stick to their original diagnosis come #### or high water!! Hopefully, your docs are educating themselves better now and can help you and remove the "crazy" tag, but I'm sorry you had to go through so much to get to this point.

Same here. I feel crummy, and my son, who has been doing well for about a month or so, crashed on me yesterday. He is having high BP and tachy again. Both of us have really bad fall allergies. Don't know if there's any correlation here. But we are both definitely worse off with the HR/BP issues in the fall. Melly

Definitely get to a dermatologist. I have had 3 moles removed, 2 of which were basal cell carcinomas. Yes, "cancer" is a scary word, but it's a lot scarier if you don't get it treated early. And your moles might not be cancerous now, but they COULD be one day. I haven't had a problem since, and I go for my humiliating "full body exam" anually. No, it's not fun, but it makes me feel safer to have them examined. So, go consult a specialist. And, if you do need them removed, make sure they give you the novacaine WITHOUT the epinephrine. I swear, you have to tell them these things!! Melly

I'm sorry you are disappointed with the amount of replies you have received from your posts. I am also a newcomer, and have had lots of replies to some of my posts and not so many to others. I have also had people totally and vehemently disagree with my posts or replies to other posts, but I try to keep a thick skin and hope that I will meet others like me and my son and get quicker answers to our questions because so many people here have been down this road long before us. And I have met people who have shared my experiences and symptoms and agree with my take on things. Everybody's different as far as exact combination of symptoms and what treatments work best for them. If I haven't replied to any of your posts, it's because I didn't have any info that I felt I could offer you in the form of help. But, in the form of support, I'll be there for you. Drop me a line anytime by personal message here, and I'll send you my e-mail address. Please don't leave!! I truly believe this a symbiotic community with a lot of people who want to help each other. You're included!! Melly

I'm sorry to hear you are going through the gallbladder misery. But the pain will go away when it's out. I had mine out 3 years ago, and the reflux and pain went away. They took good care of me to keep my BP up, and it was done outpatient. Surgery is so scary, and my husband literally had to drag me into the OR, but I'm glad I went through with it. A friend of the family refused to have hers out because she was afraid to, and ended up with a ruptured gallbladder. She was in the hospital for 6 months having multiple blood transfusions and reconstructive surgery on her bowels that were damaged by the bile, leaving her husband to take care of their small children. Your mother is wise to tell you to have the surgery. Just make sure your OR team is aware of your dysautonomia issues, even if your doctor passes this info along. Trust me. You have to remind them of everything!! Also, avoid onions after the surgery. I don't know why, but just about everyone I know who has had a cholecystectomy, including me, can't eat onions!! Take care of yourself. I'll keep you in my thoughts and prayers. Melly

My 13-yr-old's HR and BP is like Poorbear's...all over the place. When he is upright, his BP will be anywhere from 140/110 to 170/110, and then drop suddenly. His HR goes from the low 100's when he has immediately stood up, and then goes into the 140's when he's been standing for a long period of time. I don't know the exact etiology of this. I know when exercising,that the top number normally goes up for some people, but the bottom number should remain about the same. I don't think your physician is worried unless diastolic starts climbing over 90. Physicians follow guidelines for "normal" BP values for people, going anywhere from borderline to severe hypertension. Of course, for us "dysautonomiacs", nothing is normal!! I didn't understand from your post. Are you taking you BP at home? It's a good idea. If you feel that you are experiencing a change, then keep a journal of daily readings. If your BP is getting higher, it would be helpful to your doctor to see this trend. What's normal for one person isn't for another. I hope you feel better. Those tachy episodes create so much alarm and fatigue. Take care, Melly

Hi, Lauren. As you know, I'm definitely in, so you can throw my name in the hat. I'm in Macon. Sat. or Sun. afternoons or evenings are good for me. Let's get some other "peaches" involved. I think this is a great idea. You have my e-mail. When we get some others involved, I'll help you try to find a meeting place, if you want. A church or restaurant sounds like a good idea. I'm sure my church in Macon would be more than welcoming, but Macon might be too far for folks to drive. Let me know. Melly (Melissa)

I agree with Lauren. No alcohol and no caffeine anymore for me. The alcohol definitely will cause me to have tachy and hypotension. The caffeine just irritates my bowels even worse than they already are and cause tachy. Melly

Hi, Stace. Just wanted to say "welcome". I'm glad you are able to see a dysautonomia specialist. I hope this doctor will be able to help you. I understand what you mean about having to cope with lifestyle changes (driving and so forth). I miss the "old me" and my activities. Don't give up hope. I'm relatively new here, and I have learned so much from the folks here. They're an awesome group!! Melly

Stacey, try looking up "tremor" or "essential tremor", in the medical context, not as in earthquakes!! See if this is what you are experiencing. And, of course, you should mention it to your doctor. I have tremors in my hands and legs, particularly after a bad heart rate/ BP episode. But I don't have the head shaking thing. It just SEEMS like my head is swaying from side to side, more like a visual disturbance. Mine is from inner ear problems as a result of lifelong allergies and ear infections. But definitely look up essential tremor. Many people have tremors in their bodies, esp. head and hands. Hope this helps. Melly

Thanks, everyone, for the suggestions and advice. I have suffered from migraines since my late teens, but I have never had them this frequently. I don't drink alcohol, caffeine, and am very diet-conscious about triggers. MSG is one for me, so I check labels very carefully. They do tend to be worse around certain times of the month, but, lately, they just happen all of the time. It's unnerving and painful. Yes, the idea is not to get one, and Depakote worked really well at preventing them, but I had terrible GI problems with it. Zoloft is out because it causes me to have panic attacks. Imipramine is out because it made my BP bottom out totally. I've had a head CT, so it's not a tumor. (Yikes!!) Hopefully, the new med will help, and maybe this is just a passing phase. Melly

Becky, from you symptoms and tests being run, they're definitely looking for pheo. I wish you luck with that. Keep us posted. Melly

Hi, Poohbear, Hormones can be mean and they can certainly make you feel mean, as my husband has learned the hard way!! But your cycle will pass, and, in the meantime, have that ice cream. Life is short. I hope you get to feeling better soon. And you are free to vent anytime. I think you have my e-mail, and we are both GA peaches, so feel free to vent or e-mail me for support. Take care, Melly

Thanks, Ernie, for sharing your experience. It sounds like I really need to prepare for this, esp. considering I have 4 kids (3 under the age of 6). My 12-yr-old is a big help, but he is having similar problems, except he sometimes gets huge spikes in his BP as well as the low BP and tachy. Family ties... Thanks, Melissa, for your encouragement about the Maxalt. I feel more relaxed about taking it with my next migraine. I'm sorry you're on a waiting list just to see a GP. That stinks!! I ended up with a GP here because there was a 2-month wait to see an internist, which I was used to seeing and preferred to see. But you've made me realize how fortunate I am to have seen anybody within only a week. And this doc turned out to be pretty sharp. Like in another thread I posted, it took him only 20 min. to decide he needed to refer me out for a TTT. I do hope you find a "new doc" soon, and that you get a good one on the first try. I honestly rolled my eyes when I found out I would be seeing a GP this morning and prepared for the worst. Now I'm eating crow. Melly

Becky, in regards to the adrenal issue: do you have high blood pressure, either sustained or episodic? My son has episodic high BP, and they worked him up for pheo, but never found a tumor on his adrenals or anywhere else. Pheos can show up in extra-adrenal areas, esp. in children. Has your doctor done a 24-hr urine on you to test for catecholamines or a plasma free metanephrine? This would be a first step in looking for pheo. My son was positive for catecholamines in his 24-hr urine, but a lot of things can cause that. Usually, with people who have pheos, the level of catecholamines is extremely high, and their BP is usually extremely high sustained or they have episodic spikes followed by low BP. I had a friend have one removed. Surgery can remove the tumor, but special considerations have to be made to normalize BP prior to surgery. Again, I hope you get things worked out, and I hope it's not pheo.

Thanks for the advice, Poohbear. I'll plan on having my husband take me and coming off the meds prior to the test. I have a feeling I'm going to "wipe out" during the test, especially considering how things have been going lately. You know... stand up, hit floor. I feel more upbeat, though, after having a good doc office experience today. Melly

Hi, everyone. For those who suffer from migraines, has anyone ever taken Maxalt MLT for their migraines? I understand it can cause tachy, which I don't need more of. I only have the tachy upon standing. My heart rate is usually extremely low when I'm sitting down. I used to take Depakote for migraine prophylaxis, but it caused GI problems in addition to the ones I was already having. My new doc prescribed the Maxalt for me today. I'll try anything to get rid of the weekly migraines, but being so drug-sensitive makes me nervous when I try anything new. Just wanted to know what other folks have experienced with this or other migraine meds. Also, this wonderful doc got right to the point and is scheduling me to have a tilt table test in about a month. This should have been done when I was in SC 3 years ago, but better late than never!! But, okay, guys and gals, be honest. How horrible is the tilt test? I know I need to have this done, but I'd like to know what to expect!!Should I take an extra dose of klonopin before I go? Just kidding!! Thanks to all for their experiences. Melly

Hi, and congratulations, Becky. Sounds like you have a really good doc on your side. I hope things continue to improve for you. I, too, am being worked up for adrenal insufficiency...again. I think what your doctor is looking for is Addison's disease, which can cause people to have low blood pressure. They'll check an AM cortisol level. I saw a new doc today. I thought I was seeing an internist, but he turned out to be a GP, but was really great. He didn't throw anxiety disorder accusations at me, and he referred me out for a tilt table test...all in 20 min. This has got to be some kind of record for me as far as doc visits go. I warned him that I was his worst nightmare!! He also wanted to check for hypoglycemia, in addition to Addison's. I don't know if hypoglycemia is part of POTS, and I don't think that is my problem. But he saw that my mother is hypoglycemic, so I guess he wants to rule that out as a syncope culprit. Like you, I finally feel like I'm getting somewhere. I wish you the best of luck with your disability discrimination case. I can't work in my profession (med lab tech) because of the meds I take, and am waiting for a decision on disability benefits. Take care, Melly

Pooh and Dizzy, I'm the Macon gal. I would also be really interested in forming some sort of support group. Let me know what you all think. Contact me by e-mail anytime. I think April is also in GA? Probably many others. I'm relatively new here. Best, Melly