SarahA33

LMG, I am not sure exactly why the Benadryl works for my migraines.. (im just glad it does). Also, I am unsure of what it would do for your BP and HR and maybe you could check w/ your dr. first to see what he/she would suggest. I take Zyrtek and Zantek together because they are histamine blockers (H1 & H2) and help with my flushing caused by the pots sorry i couldnt be more helpful sarah

I LOVE your POTS goal checklist. I think those are awesome goals. I have had to be careful of long term goal setting with my Type A personality, because when I wasnt able to reach them I was incredibly hard on myself. I still am. Short term goal setting has been really helpful for me, though. Clonodine is really helpful in reducing my BP and it has an effect on lowering my hr as well. I had no idea it is used in ADHD too, but am not suprised. It's got a lot of great benefits... However, in the beginning I did have a lot of really negative side effects and hated it. I still have a little bit of dry mouth but that's so tolorable and not even worth complaining about. Are you on the pill form? I know the patch can be a really good option for some people too.

Hey Ashley, Thanks for the kind words and thoughts. The truth is that I really should be exhausted, but I'm not.. not physically, anyway. Mentally sometimes I wish I could just "shut down" because I'm always thinking about something. Im like the Energizer bunny I've been on Verapamil (Calan) which is the totally wrong kind of BP med for me, and also Topril in the past.. they didn't work well for me. I tried them for about a few months but didnt experience a reduction in pressures like I have with Clonodine, and Propanalol. You are corrrect, the midodrine has lessened my BPMs along with the beta blocker, clonodine, and ativan. I also experience lower pressures sometimes so I can relate in a sense and I give you a lot of credit. It's incredibily challenging to have a low bp because of how symptomatic you can get. Howe are your numbers running lately? Hope you are doing well. Thanks for the medication suggestions.. I appreciate you taking the time to list them out for me. Sarah

Khaarina, I'm a patient advocate and sometimes co-run a migraine support group here in Buffalo, NY and am not an expert on migraines/headaches. These meetings have been full of info as the director attends all the national conferences in like Hawaii (insert: envy lol) She brings back so much literature and We use the magazine Headwise through the Nat'l Headache Foundation, as distribution material (which is great about talking about up to date meds and new trmts, etc) and have a lot of drug reps come in to talk about triptans, etc. (Khaararina, in your case, I would be really hesitant about using triptans because 1) you've had this migraine/headache already for quite some time so I don't think a triptan like imitrix or maxalt would be beneficial at this point, but you never know unless you discuss it with your dr. first I guess. 2) I cant take triptans because of my pots. The cardiovascular effects it has on my system are horrible and they screw around w/ my BP and HR a great deal. How are you feeling today? I hope that your reply back to all of us will be that you've been able to break it. Fingers crossed for you Christy How have your experiences with tramadol been? I'm super curious about the relief of tramadol vs an opiod I was initially given Tramadol before a narcotic ( cause back then it wasnt a narcotic even though it is now), anyway.. I acted so loopy and weird and my pupils got HUGE! My fiancé compares my behavior while taking tramadol to that I looked as though id been drinking. And I don't drink. Hope everyone is well and headache free today!

hey alex, Yes I've been ruled in and out for virtually everything - including IST, which ive been told I have. I actually have been signigicant improvement on the florinef and midodrine. Despite the ER setbacks (which have actually decreased... which is depressing because I still feel like im there a lot, lol) , over all I am much better off than I was before. This is the first time I've made real progress, I realized though that I might "rock the boat" by being on both the florinef and midodrine at the same time. I do not take either of them 4 hours before laying down so that I decrease the chance for supine HTN and also I take .2 Clonodine each dose of 10mg. Midodrine (Along with Ativan and propranolol) Its complex but it was set up that way. I appreciate very much the concern for a second opinion but I'm gonna stay put..

Forgot to add something, sorry! h2o may not be enough if it's related to dehydration... Try some pedialyte!

Hello, I just thought I'd add when I first became symptomatic it was w/ migraines. However, in the beginning what seemed to work the best for me was having an infusion at my neuro's office. it consisted of: 25mg IV Benadryl, Torridol (unsure dosage but it;'s like IV motrin), low dose Compazine for the vomiting, magnesium and fluids. If your headache/migraine doesn't go away soon maybe you could call your dr. and see if they would advise anything. Do you have urgent cares or immediate cares where you are from? They are as popular as mcdonalds around here! Like Katy mentioned, Excedrin was my first choice but I wound up w/ a nasty medication over use headache on top of the migraine. It wasn't fun.. so sometimes a step up like an infusion may be helpful. Hope you feel better really soon!

5-Hydroxyindoleacetic acid (5-HIAA) is found mainly in serotonin. I only wondered if yours were measured with both blood and urine as mine were extremely high in blood work but slightly above average in urinalysis. Carcinoid's increase your serotonin, but so does certain medication combo's and something called serotonin irritation syndrome, I didn't have any of them. Just naturally produce higher than normal levels in most things I guess!.

Hey Kris, I'm so relieved that you had a good appt today with the Endo. I hope you'll keep us posted on the results of your tests .. What 24 collection tests are you doing? it may be useful to add a 5H-iAA, serotonin and catecholamine's if you haven't had those done already.

Ashley, Hi there. I'm sorry I am unable to relate to your first set of symptoms. I rarely sleep at night and never cat nap during the day. I often do wonder what wakes me up though. The surges is my best guess. Often I wake up with really bad tachy and palpitations. Sometimes sweating and headaches. have you had a sleep study? Lastly, I wanted to tell you that I have passed out because of the hyper pots (which is rare to actually "go out") and have pre syncope episodes throughout the day. Sorry I could not be of more help. - Sarah

Gemma... are you currently in buffalo? or did you already see dr. blistheyn? Shes right in my backyard but Ive never gone to see her. curious to hear of your experience if you wouldn't mind sharing!!! thank you! sarah

Joann, I came on this site to find others who are in the "same boat" as I am. I've said it before, I no longer feel like I'm on an island. When I go to the ER for my BP/HR I rec'v 3-4 bags of saline and up to 4mg at various times of IV Ativan. Does the trick for me. Who is diagnosing you with pots at the moment?

--

--

Hi Liz, Many doctor's are cautious about putting their hyper pots patients on florinef and midodrine, but its not completely unheard of. I'm just lucky that I had doctors willing to bite the bullet. I made virtually no progress without either of those medications. I'm Diagnosed as Having Hyper Pots through certain levels in my blood/urine (catecholamine levels with serum norepinephrine) as well as a Tilt. Mornings are absolutely awful for me.. my body just goes into a panic overload. My pressures range from high 200's to low 90's and HR's usually are btw 130-170. It has to be the most challenging part about treating this. I began Florinef a year and a half ago. I take my last doses of florinef and midodrine 4 hours before I lay down at night so I don't increase my supine pressures. I take Propanalol, Clonodine, Ativan, Florinef, and Midodrine.

Thanks Janet. I appreciate the kind words. I think we're making our way to calmer waters but things seems to change so frequently. it is frustrating. Hope you are hangin in there as well. I'll call you at the end of the week when things die down.

Alex, thank you for sharing that book, I read it online. Whole chapter on Mestonin. I understand a lot more about that medication now. complicated medication, it is. Thank you!

And I forgot to add that the fact that your cardiologist is "backing you up against a wall" is really just wrong. And having poor trust in him from the first incident is also a reason to maybe find another cardiologist who doesn't sound like a bully?

Hi Canadian Girl, I've had virtually the same cardiac work-up and it's not easy. I'm really sorry you have to go through all this. I tried a CT angio twice but we seem to have had opposite problems, they couldn't get my heart rate to come down. So, next time I took two clonidine and an Ativan. "The radiopharmaceutical injected into you for your PET scan is called FDG, which stands for “fluoro-deoxy-glucose”. This is a very low concentration solution of glucose in water. The glucose, or sugar molecules, have a radioactive isotope of fluorine attached to them which allows the scanner to “see” where the sugar is being used (metabolized) in your body" ( adronline.org ) Anyway.. I had absolutely no reaction from this, which is rare for me. The biggest pain was having to sit there for an hour after injection.. And use to the ladies room first, because if you have to pee you reset the whole thing. If your body wont cooperate with the CT Angio then I'd go with the PET Scan, the normal angiogram isn't awful but its invasive . Maybe you can squeeze another quick echo in there just to be sure?

Okay, I don't know about all of you, but I am sick and tired (pun intended) about having to go into the ER for 4 1 1/2 bags of fluids and IV Ativan and beta blocker. I took my midodrine,florinef and clonidine while I was there to. Have any of you had ER experiences where they haven't wanted to dismiss you after you've been diagnosed w/ pots? I went in HR 177 and 11 hours later was 154/110 and HR of 130. The admitting dr said "I could never let you leave this hospital with a heart rate this high" and walked out. I thought, oh no .. He thankfully called my dr. and he told him "this is a chronic condition and if he kept me in til my HR fell below 130 I'd be moving in" So I got to leave, WITHOUT a diagnosis I would have begged them to keep me in there, but with the hyper pots dx there is just no need after fluids are done.

Andy, Don't throw out your phone books! (Yes! They still make them,lol) They help to keep your arm straight and at heart level sitting and upright. I've been using them for years.

"Sarah, do I tell the doctor arranging my schedule to include Dr. Joyner -- I hear it's a very busy one. Or do I just contact him when I get there? I'm going to be seeing the cardiologist who originally saw me and diagnosed me, who has set me up with an autonomic neurologist and who knows who else. " I would highly recommend arranging the visit prior with Dr. Joyner. Much like most of the doc's there, he travels and is quite busy I hope you can arrange your schedules to have a visit.

Its actually an RX for breakouts that I was given when started Florinef... it's a wipe and I had absolutely no side effects from it (which is very rare) Anyway, it's called Prascion which is an rx only. I did rec. samples to try before picking up the actual script and I love it. I broke out so badly from the Florinef (at freakin' 25) And this cleared it up without drying it out. Best of luck, sarah

awesome alex, thank you.

Well As of right now testing is completed. I'm supposed to go back annually to find the Pheo Scans since my oncologist described it as "picking up glitter", And they are basically saying that the cells just aren't showing up this soon are still causing all this havoc. I don't agree and neither do my other doctor's. My response to certain meds, high levels of norephenephrine and catecholamine’s and the Tilt Table test proved I have hyper pots. How about Adrenal Related insuffencies. Like: Addison's and Cushing's. If they think Addison’s or cushings: def. see an endocrinologist