SarahA33

Hi bambam, thanks for the support!! Is that your yorkie on the pic? I have two and a great Dane :-)

Hey Kara, Thanks for the reminder to take it easy Sarah

Fainting Goat, I've been struggling also (with different issues), but I can identify with how challenging the day to day management of this is. It's exhausting. We all just really do the best that we can.. Do you typically have the pre-syncope or do you actually pass out? That all sounds so scary... you've definitely got my warm wishes and positive thoughts sent to you... Regarding the Coreg, did you call your dr on call or maybe your pharmacist to see what they may recommend? Just trying to think of things that may help... Hang in there Sarah

Janet & Chaos, this was taken from the link you posted, "candidates for a device that includes biventricular stimulation (CRT/ICD combination device) The CRT/ICD combination devices: Resynchronize the heartbeat & Slow down an abnormal fast heart rhythm" Sounds just like me. I printed this out and am hoping dr. huang on Tuesday will be able to explain it further and if they specialize in it or not. The great thing about the Cleveland clinic is that they offer a Same Day Appointment Service. Unfortunately, you aren't able to choose the physician you'd like to see. However, Chaos, like you mentioned, timing may be somewhat important so this may be a good option for me after I am at strong on Tuesday. We will see. One day at a time and I'm really trying my best to not let my imagination/fear run too rapid. I'm trying my best to follow my doctors instructions until the appointment. I'm on a stronger dosage of Ativan this weekend and cant do anything to induce a higher hr and to keep my stress levels down because if my HR ends up exceeding 180 I have to go into the ER. That was our deal.. Thank you guys for your advice and help, I hope everyone is having a nice long weekend.

Hi All, I can't even begin to thank you enough for the kindness you've showed me. It's a strange thing.. close friends and family know about the situation but they don't know what to say to me. It amazes me that reading these comments hits home and provides me with a sense of peace that those closest to me just aren't able to provide. (not to their fault at all!) Thank you for that. It's strange how normal my tachycardia has become and how I've adapted to dealing with it, but this flip-flopping in my chest and feeling like someone is turning a light switch on and off is a whole different ball game. All about peace, your right - it did hit me out of no where this time.. usually when my adrenaline will get to pumping I'll feel something similar but only temporarily and not to the gravity it was Thursday. Janet, thanks for offering to look into this further for me. it's nice to have a smart cookie like you on my side Chaos... I'm trying my best to stay positive, so thank you to you for the cyber hugs and support. Here's to hoping he's got the right answer also. As always to all of you, any and all of your feedback is so very much appreciated. Sarah

FYI -- if you ever need to have a dental procedure... I had a tooth extraction last year and they gave me epi for the numbing medication. My heart rate jumped 100 points in about a minute. There is another numbing medication that is available without epinephrine in it, however, it takes longer for the bleeding to stop after the procedure Is done. That's the only difference but totally worth it. With the epinephrine numbing I thought I was a goner Take care Sarah

Hi Corina and Katherine, Thanks so much for the support and kind words. I got fitted for the holter today so I'll have some answers when I get to the Electrophysiology lab. From my understanding, and I haven't done much research regarding it over the last few years because I've filed it away in that "Never happening" compartment in my brain, but this is from the university I'll be going to be on Tuesday. https://www.urmc.rochester.edu/cardiology/patient-care/conditions/arrhythmia.aspx Pacemaker was wrong choice of wording, I misunderstood as a pacemaker type procedure. Katherine your correct that an actual pacemaker is for bradycardia. I'm going to consult for a procedure called Ventricular Cardiac Ablation or a reschynrinazation device. As scary as this all is, something has be to done because I've steadily caused damage to the left ventricle and enlargement. The cardiologist I saw this morning was completely uncomfortable with arrymitha correcting medications. His suggestion was to wait it out until Tuesday or get admitted into the ER which would get me no where. The hospital is about an hour away and they are the best when it comes to EP so I decided to wait.

Hi everyone, I had a really difficult day yesterday. I was resting at my normal ridiculous HR btw 120-130 when I immediately spiked to 200. but I feel a clicking in my heart. It's almost like it wants to beat but pauses and then adds a double beat to catch up. It's not a flutter like I can get sometimes. I littraly can feel it pause... Scary as I was just sitting surfing on my ipod doing nothing to induce it. I called my doctor and went in. The BP was actually not terrible, but my HR was around. EKG's and echo's were done and sure enough, I slipped into Supraventricular Tachycardia, nonspecific abnormality, left ventricular hypertrophy (which has been seen before in ekgs and echo's but has now appeared to have gotten worse) As I've mentioned, I've seen n a TON of doctors, including to EP's who both told me 4 years ago I'd need a pacemaker. I of course opted for pharmaceutical treatments which have helped a little but not much. Clearly I cannot manage with heart rates and bp's this high for more longer.. I have a constant fear that my heart is just going to give out. I am running out of options and causing such harm to my body. I am 27 but feel like I'm 87. I have an apt w/ cardiology this am and will have the holter once again. I've been up all night crying because I just can't understand with everywhere I've gone,all the meds, all the doctors Ive seen, that I've wound up at this point. It's a pretty crazy circle I guess. Any suggestions would be appreciated. Thanks in advance Sarah

Hi Fainting goat, I can't offer any advice w;/ Coreg. I've never been on it. Just wanted to wish you the best of luck that this helps you. Fingers Crossed!! Sarah

K, The two main one's i'm familiar w/ are Verapamil and Amlodipine. Verapamil has actually less side effects of the two. Amlodipine is more commonly prescribed but imo it's important to watch out for edema, which seems rare. Another side effect that I've heard of is rapid and pounding heart rate's. However, your doctor clearly knows the risks and thinks it could benefit you. I know you've been getting some bp spikes recently so it may be something to consider. Pros: "Verapamil exerts antihypertensive effects by decreasing systemic vascular resistance, usually without orthostatic decreases in blood pressure or reflex tachycardia; bradycardia (rate less than 50 beats/min) is uncommon (1.4%). During isometric or dynamic exercise, Verapamil does not alter systolic cardiac function in patients with normal ventricular function. " - drugs.com "Amlodipine besylate tablets USP may be used alone or in combination with other antihypertensive agents. Amlodipine is a prescription drug and it acts as like a calcium channel blocker. This particular drug dilates the blood vessels, thereby enhancing blood circulation" - Benefitsof.net Also, at one point I was on a beta blocker, alphabeta, calcium channel and hctz. Im guessing your still on a low dosage now of the beta blocker so taking the additional bp med shouldn't cause you to bottom out. Always here for you, Sarah

Hi Ben, I have been diagnosed with hyper pots on 2011. I had a long journey including many doctors and tests, like most of us on this site this site. What tests other then the blood work have they done to rule out neuroendo? The last test I had was the tilt and that's where I got majority of my answers with elevations in already high neuroendrocine values. You mentioned high blood pressures--- what is your heart rate like? I was also active, like a lot of us on here also. I cheered throughout college and coached for about 5 years until I had to give it up as my symptoms took control. Regarding my symptoms: High Blood Pressure, Tachycardia, Brain fog, flushing, extreme brain fog, constant movement of legs I have really extreme high energy levels and also have a terrible sleep schedule, I rarely get 2-3 hours a night. Do you mind sharing where you are located? Maybe another view from an autonomic specialist may be helpful. Sorry to hear of your struggles, it sounds like you aren't going to give up until you figure this out. Don't give up and know that you aren't alone in this, Sarah

Hey Racer, Just curious if you have your valproic acid levels checked while on the Depakote? Have a good one, Sarah

Freaked, I actually read that three times to make sure I was reading it correctly. What in the world?? I would suggest making an appointment with your primary doctor to talk about this horrible experience. The fear of the unknown and wondering if your specialists are going to get a report from your primary dr is probably something that's weighing extremely heavy on you. This "psychiatrist" should have his license taken away.. I also recently had a consultation with a psychiatrist and it was nothing like that at all. He also specialized in neuropharmacology, difficult diagnoses, & complex clinical cases. If you agree to see someone in that field again, it's always okay to ask for a second opinion or just flat out decline seeing a certain doctor. Did you sign a disclosure to release the psychiatric consult notes to specific doctors? I was asked specifically which doctor, if any, would I like the report sent to. I was also asked by the psychiatrist if anything he and I discussed not be mentioned in the report. Did he offer you any of that? I'm really sorry you've had to go through that not once, but twice. It sounds like that psychiatrist already had decided that he wasnt going to trip over his ego and change your diagnosis or back down before he even walked into the room. Let your parents hire that lawyer -- he shouldn't be practicing. Dangerous

Jackie, My heart rate lowered a great deal when taking the following medications 3 times a day at the same time: Midodrine, Ativan, Propanolol & Clonidine. Since they are all short acting medications, I've had a lot more success when splitting them up to 3 times a day. I Start Mestinon this week in hopes of helping with my heart rate and thermoreg stuff. Hopefully your dr. will be on board! It can be really frustrating when you follow all the advice of your doctors and take the medications they suggest and still not have the end result anticipated. Take care -- Sarah

Oops.. have you tried Valerian Root, Feverfew, or Butterbur?

Hi Rachel, Sorry to hear about your migraines I've had them for almost 8 years, but the last 2-3 years have been horrible. Like you, I am also unable to tell when a new migraine begins and one ends.. the only clue I have are when the aura's kick in. Slurred speech, hearing loss, blurred vision, numbness.. The nausea and vomiting lasts forever it feels like sometimes. Do you have aura's with your migraines at all? The longest migraine I've had is for 28 days but am very rarely pain free. Maybe 2 or 3 days out of the month..I know exactly what your going through. I have seen a lot of neurologists and the treatments are basically classic. It sounds kind of like you should take a look at Chronic Migraine. The treatment for that is basically a preventative: Topamax, Depakote, Amitriptaline, Propanolol, Verapamil (the last two might get tricky if your have lower bp's), Abortive: Imitrex, Maxalt, Relpax (which can be tricky if you have high pressures like me), and Rescue: Pain Relievers. Also, Botox has just been approved for the treatment of chronic migraine. I co-run a migraine support group here in Buffalo and there have been a great deal of people who have had a lot of benefit and reduction in the intensity's and frequency's of their migraines. Also, trigger point injections and nerve blocks are available for pain control but they hurt worse than the migraine sometimes If you are looking for other options than medication interventions, I also receive chiropractic adjustments twice a week. I haven't noticed much of a difference though. However, there are a ton of people who have had success with this. I mentioned a post I started about chiropractic treatments a while back, I often wonder if the migraines are a secondary diagnosis to the POTS.. it really doesn't change much though. KJay covered this part in her post so I'm sorry for repeating, I also have difficulty with identifying my triggers. I have an extremely poor sleep schedule so I know that must contribute..other than that, I keep my journals and diaries and nobody can come up with an answer for me either. This might sound random, but which helps you more -- ice or heat? Good luck with everything. I hope you find some answers and relief soon. Sarah

Kayla, Sorry to hear about your struggles as well as your friends daughter. I have trouble handling this as a 27 year old woman, I couldn't imagine how difficult it must be for a 10 year old. I am from NY so I am unable to help with the Dallas doctor search, however, when I was reading what you mentioned her current treatments are, I saw she walked on a treadmill. Just a suggestion from my experience: I started seeing improvements when I switched to the recumbent bike and "x-ed" the treadmill. (I have a hard time standing because of the affect it has on my heart rate, cognitive function & pre-syncope) Also, I did want to mention a med called Mestinon. I saw you mentioned they are hesitant w/ pharmaceuticals, but this medication is actually considered not as dangerous as florinef and midodrine. The link below will hopefully be helpful .. (and it's pediatrics) http://pediatrics.aappublications.org/content/118/5/e1563.full Good luck to you and your friends little girl. You seem like a great friend to go above and beyond, especially when you are dealing with your own health challenges. Take care, Sarah

Hi kJay, I had also read some case presentations but had a hard time basing some suggestions off of them. It's difficult because we are all so completely different. As you know, I'm pretty extreme with my pressures and heart rates, and increasing my sodium has been one of the best moves i've made so far. I do not have swelling or water retention either, and even thought i'm on a low dose of Florinef to taper off, I at one point was on 0.4mg and still did not swell. Take care! Sarah

Fainting Goat, Before you stopped treatments, did you notice a difference in your migraines? I've been having adjustments 2-3 times a week and am still suffering. I have noticed a big difference with the muscle spasms in my neck and shoulders though. Sorry that you had to discontinue so quickly. Kara, I'm sorry to hear about your struggles. It sounds like you have been through a lot. How long have you been diagnosed with pots for now?

There's some confusion for me whether Dr. Grubb recommends higher sodium intake for his hyper patients? Of out curiosity can you guys help?

Hey there! That sounds absolutely awful. I'm sorry you had to go through all of that. Have you had any seizures before? Hopefully you'll be able to follow up with your doctor soon! I am unable to identify with the seizures, I can't magine how scary that must have been for you. Hang in there! Regarding the Compazine, i'm guessing it would have been given IV. I've had that same reaction in the ER for migraine treatments and the IV compazine took my heart rate from 140 to 220 in 30 seconds. I thought i was going to die actually. The doctors gave me benadryl for it but it really only lasted about 2-3 minutes. I've taken the pill form for years but never received it IV. The way it was explained to me was that the pill form is first processed through your liver but the IV goes right into your system and hits your respitory/cardiovascular system. Good luck with everything

Hi everyone, Wanted to reach out and see if anyone has tried chiropractic adjustments for their dysautonomia. I'm receiving adjustments twice a week for my migraines but haven't actually noticed an affect on BP & HR. It says specifically which region to manipulate in small article I found below so I'm going to have the chiropractor start to adjust that also. Any feedback is appreciated. -Sarah Sparked my interest: http://www.parkbenchchiropractic.com/articles/Sympathetic%20vs%20Parasympathetic.pdf

Kitt, Lebetalol made me so much worse. I was on the max dosage for such a long time until my current doctor took me off of it on my first consult with him. It made my flushing and thermoregulation issues so intense (which I couldn't put together for some reason, just thought I was progressing before I had a diagnosis..) I got so much worse from it and couldn't understand the time why so much medication wasn't helping. Go figure.... I wish I could help regarding the hyper pots diagnosis and low numbers but I'm completely on the opposite end with incredibly high numbers. I take Propanalol (Inderal) which has helped along with the Ativan, Midodrine, & Clonodine.

Hey there! I'm sorry that we're all in this boat together but I am so glad you have found some answers. I'll keep my fingers crossed regarding the midodrine. It has helped me tremendously. Also, nice to know your spirits are up! Take care, Sarah

Well, that settles that! You need to teach me your research strategies, Alex. My curiosity got the best of me (again). I was thinking if the surgery would actually be contraindatory for me considering I seem to respond to vasoconstrictors and not to a vasodilator. With the high numbers in my BP spikes I clearly am every black box warning as to not use these medications but yet I have such improvement.