bethanyh

Thanks Debbie, sorry for my delay in responding, I did not even see your post. I am sorry to hear that no one takes you seriously either, it is an awful feeling! My doctors are know I have bumped my Midodrine back to 5mg 3x daily and that seems to be fine but they said I can titrate up again if needed. You are right, this is absolutely a roller coaster ride!

Ancy: Thank you for your well wishes and prayers, I appreciate it! And for writing back about your experience. Both times in the ER they tested for a number of markers, including any inflammatory or infection markers, white cell, red cell, etc but everything came back normal...I am really starting to dislike that word normal! I have never had sepsis so I don't really know what to expect with something like that but it is certainly worth looking in to. Thank you again for your thoughts! kellygirl: Thank you for sharing this information with me, I have not heard of this type of reaction before to benzodiazepines. When I first began Xanax, then moved up to Ativan I had no negative side effects, which for me is a rarity because I am typically hyper sensitive to any and all medications. I would be interested in the article, I will try to search on my own as well to find out more information. Thank you again!

I will try to make this as concise as possible but I have a multi-question, long and confusing post, thank you for bearing with me! My BP is usually mid to high 90's/high 50's or low 60's and resting heart rate between 60-90 bpm with multiple times of tachycardia throughout the day. I was taking 7.5mg Midodrine 3x daily and not seeing an increase in BP numbers but feeling semi less symptomatic (inconsistently). I am also on a thyroid supplement and I take Ativan. I was at the Cleveland Clinic three weeks ago and became sick while there (head cold, stomach upset). I did not think much of it, came home feeling terrible and thought I just needed time to recover. The one afternoon I was feeling particularly awful, very dizzy and disoriented so I took my BP and it was 115/72, a reading I have NEVER had in my life! My pulse was 61. I continued to take my BP periodically the remainder of the night and it kept slightly increasing, as did my heart rate. By the time I went to bed my BP was up and my heart rate was around 99. I took my .5 Ativan as usual and expected to be back to "my normal" the next morning. The next two days my heart rate never dropped below 100 bpm and was staying in the range of 111-125 resting, any time I would get up or move it would increase even more. I took an extra dose of Ativan (.5mg) mid afternoon both days and that did not help anything. I called the on-call cardiologist at CC and he recommended an ER visit for evaluation. They gave me fluids only, no meds, and my HR came down to about 90 and BP was around 107/67 upon discharge. All blood work was normal, chest X-ray was fine. For two days I was back to "my normal" then the spike of both happened again. I let it go for three more days but was again advised to go to the ER. They repeated the same blood work and X-ray, the doctor told me my vitals were normal and I was fine. I insisted upon the fact that my BP was significantly higher than MY normal though I realize 127/78 is fine for most healthy people. I also heavily insisted on the fact that my resting HR had been over 100 bpm for three days and I was advised by CC and my local cardiologist to come in for evaluation. This time I had to ask for saline before I left and they gave my the smallest bag possible, very frustrating! Since those two ER visits my BP has remained high for me (112-127/65-78) and my HR has been all over the place from 60-136 bpm with extreme spikes upon positional changes or exertion (i.e, a shower). I am waiting to hear back from CC and my local cardiologist regarding all of this. Here is what I am doing now/questions. Please realize that I am reaching out for help, not taking anyone's answers as complete or total medical advice: 1.) I have stopped taking my salt tablets (SaltSticks) and am not putting salt on any foods, whereas three weeks ago I could not get enough salt. I have kept my fluid intake the same, about 70-80 ounces per day (I have stopped drinking my Propel Electrolyte and coconut water because of the sodium levels), I am still wearing my 20-30 mmHG compression stockings, have been keeping my feet elevated, staying reclined, etc. 2.) I have decreased my Midodrine back to 5mg 3x daily but do not know if I should even keep taking it. My local cardiologist recommended keeping it steadily in my system despite higher BP numbers but I am feeling awful with a higher BP. Apparently I seem to feel better with a lower BP... Has anyone else experienced this and if so, what have you done? 3.) I am very anxious about what is happening, which is not helping my vitals, and I do not know what to do. Daily I am getting a lot of facial flushing, ears turning bright red, terrible headache, I am visibly very shaky ALL day for no reason, I am nauseous, have no appetite, my muscles are ridiculously tight, as I am seemingly unable to relax. Any tips? I have tried deep breathing, praying, any and all distractions I can think of and nothing seems to be helping my vitals. Are the things I am doing causing me more harm than good?

I am going to give it another week or so but if this continues, I think I might switch back to Global, despite wasting pills trying to split them. Thanks for replying

In January 2015, I began taking Midodrine (2.5mg 3x daily), it was the generic Mylan brand. After slowly increasing the dose I was not having any side effects but was also not finding much relief from symptoms. I read several forum posts about generic brands versus name brand and it seemed that people overall were not satisfied with Mylan but were finding symptom relief with Global or Upsher Smith brands. I asked my doctor to switch me to Upsher Smith brand but that was not available so I received the Global brand. I had no side effect problems on the Global and was using 7.5mg 3x daily but was annoyed that the pills were so hard to split (even with my pill splitter I was still wasting at least half a pill every other day). After about four months on Global, I was able to receive the Upsher Smith brand and began taking the same dose (7.5mg 3x daily) on Saturday, August 30. It seems that since I have switched to the Upsher Smith brand my usual shortness of breath is even more noticeable. My oxygen saturation has been around 95-97% since Saturday. I am always short of breath so I never paid that much attention to it before Saturday. When I used to check it, my oxygen saturation was consistently 97-99% despite always feeling short of breath. Now I feel like I am obsessively checking my oxygen level to see if it raises above 97% but no luck so far. Has anyone else had this problem on the Upsher Smith brand?

Sorry you had such a rough experience, but glad you are feeling better now that you have stopped the medication.

The only side effects I have had on Midodrine have been a headache every time the dosage was increased and slight head tingling/itching. Many people seem to have these side effects and usually within a week they tend to go away. It is hard to know because every person reacts differently to medication. I hope you are feeling better soon!

Dops: No, I have never been in a vasodialator and I have had several test performed while having the pain. Nothing seemed to show so the doctors that I have seen up to this point seem to think that it is nerve related. I have been told by one doctor that I have small fiber neuropathy, another disagrees so if I actually do have it, that may be a contributing factor. Sarah: Your words are so kind, thank you! And thank you for the extra info that I should to take to CC with me, that is very helpful. I just wore a two week ZioPatch monitor back in May and my local cardiologist did not see anything that he deemed to be extremely concerning. He cannot figure out the pain aspect either so perhaps it is nerve related. I am hoping for a more thorough work-up and suggestions in a few weeks. gjensen: I am curious about the coronary spasms, this is something I have not heard much about. What are they and how do you know when they are occurring? I am assuming they are fairly obvious when they happen.

bigtrouble: I cannot take ibuprofen type pain relievers but any time that I have tried Tylenol (extra strength) I take two pills, which equals 1000mg and I have no relief whatsoever. I have tried vapor rub, icy/hot, deep blue, and even had my doctor write a prescription for a compounding cream. Basically, you name it and I have tried it! Nothing relieves the pain. Sarah: All of my doctors are saying it must be ANS related but not doing much of anything about it. Can't wait for CC, maybe they will have more insight!

I have constant left sided chest pain, it has been chronic for almost two years but within the past month it has started to slowly move to the right side as well. There is no rhyme or reason for the pain but it is excruciating and there every single moment of every day. I have seen two different cardiologists and neither one seems to think the pain is heart related though I do have "heart problems". No one has attempted further evaluation but this is my chief complaint to EVERY doctor that I go to, regardless of what they specialize in. The pain often radiates into my left arm, upper back (between shoulder blades) and neck. bigtrouble: I have the same question, what do you do about it??

Thanks Lewis, I will keep this in mind for my next appointment!

I was diagnosed in 2007 with gastroparesis and had all of the classic signs/symptoms that come along with it. After being diagnosed, I went from three meals a day to six or seven smaller meals a day and my flares became much less frequent. My POTS symptoms began in January 2014 and between 2014 and January 2015 (when I was actually diagnosed with POTS) I had lost about 20 pounds because I was too sick to eat or the plethora of trial medications made eating nearly impossible. Over the past few months I have not had too many gastroparesis flares but when I do they are significantly worse than before. Now I am constantly hungry and eat about every one to two hours in the day but I never seem to become full. Overnight I often wake hungry (I always have snacks by my bed) and in the morning when I get up my stomach is SO upset; I feel like I have not eaten for days. Can this be part of rapid gastric emptying? Can you have both gastroparesis and rapid emptying?

Sarah and Raisin, I will PM you two, thanks for all of your help!

Sarah and Raisin: Thank you for the encouragement! I thought the internal medicine route was a little strange too. My POTS was confirmed with a Tilt Table and I have already had some autonomic testing performed: a Qsart, Valsalva Maneuver, and one other breathing test, which I was told by the doctor that I failed all three tests. I filled out the two questionnaires that Cleveland sent to me, each asked what departments I would like to see and a physician name if possible. I responded with both Dr. Jaeger and Dr. Shields because I keep seeing their names come up and positive comments with both but unfortunately I will not be seeing either of them. I looked again at my itinerary and now I am scheduled twice with the internal medicine physician as well as Dr. Mohamed Kanj, EP Clinician and Dr. John Morren, Assessment for Neuromuscular. I don't know anything about either of these two doctors, can either of you shed any light? I am not doubting the ability of these doctors but at the same time I am tempted to call CC and ask if either Dr. Shields or Dr. Jaeger would be available when I visit instead of the physicians I have been scheduled with...

Thank you both for the well wishes and advice! @ Looneymom~I am sending you a PM so the thread does not become too long

I have seen a few posts about people going to Cleveland Clinic and was looking for some advice as well as what to expect. I will be going in early July and they have set me up for an initial visit with an internal medicine doctor. They told me to plan on being there July 7-9 but right now my only scheduled appointment is on July 7 with internal medicine. Is this typical for a first appointment, that I will not see any specialists? I have filled out two questionnaires, both of which ask who else I want to see while I am there and I have asked for cardiology, GI, and neurology. I find it difficult to imagine seeing an internal med. doctor then being scheduled the very next day or two with specialists but is that how it works there?? Also, where I live the temperature has increased over the past two days and my BP has dropped from my normal range. Typically, I am in the mid to upper 90's/ mid 50's to low 60's and is now hovering in the 80's/low 50's. I have added even more liquids and salt but my BP numbers are not budging and I am symptomatic, not to the point of fainting but very much feeling like I am going to. Is this a typical symptom when the weather warms? Any suggestions?

Hi Sarah! Thanks for checking in! I sent my heart monitor back to the company May 15, they just called my Tuesday (May 26) to tell me they never received it. Then about 20 minutes later called again and said, "We found it" I thought, ARE YOU KIDDING ME?! I told them my cardiology appointment was Thursday so they were going to try and expedite the results. However, when I saw my cardiologist this afternoon he did not have the report yet. He still stuck with the suggestion of Pindolol (starting with a .25mg once a day, the normal starting dose is .5mg 2x daily). He is supposed to be in contact with the company tomorrow in order to get the report. I am waiting to start the medicine until he has the results and can verify there is not a separate issue beyond the PVC's. Thanks again, my fingers are crossed too!!

Ares22: Thank you, I appreciate your advice! Despite my enormous hesitation, I think I might have to give the beta-blocker a try and just see what happens to my BP, especially since I tried Florinef twice and did not tolerate it well. My cardiologist is very opposed to Midodrine and does not even want me on it so increasing to 4x a day probably will not go over well. I have moments of tachycardia throughout the day but my HR ranges are usually in the 120-140's, which is not as bad as some others that I have heard about who get into the 180's or more. I am just very concerned about the BP aspect. Thank you again!

In January 2015, I was diagnosed with POTS/dysautonomia and started on 2.5mg of Midodrine three times a day. I currently take 5mg Midodrine three times per day. I wear waist high compression nylons as well. However, I am not feeling a reduction in symptoms (dizziness, brain fog, feeling faint but not actually passing out, lightheaded). When I complete my daily BP checks, my BP is still in the 90's over high 50's-low 60's on a regular basis. I layer my food with kosher table salt, eat salty snacks, drink electrolyte drinks, coconut water, and plain water. I use kosher salt because the granules are larger; is there a type of salt that is better? I have been on two trials of Florinef but failed both of them. My doctors seem to be opposed to increasing the Midodrine even though it can be prescribed up to 10mg. Any suggestions on what to do to increase my BP or try to reduce my symptoms? Also, my cardiologist wants to start me on a beta-blocker, specifically Pindolol. I have looked on several different medication interaction websites and some list the two drugs as never to be taken together, others there is absolutely no interaction listed. Does anyone have experience specifically with Pindolol and Midodrine? I am also hesitant with a beta-blocker because my BP is so low and beta-blockers tend to lower BP. I appreciate any tips or advice!

I have constant chest pain, typically left sided, and it NEVER goes away. I begin feeling the pain within thirty seconds to one minute of waking and it remains in various stages until I go to sleep at night. The sensations I feel when I have the pain: sometimes it is a dull ache like pressure that needs to be released, other times it is incredibly sharp and I can pinpoint the exact location, other times I feel like something is just blocked, and I often feel like someone is electrically shocking my from the inside. The pain often travels into my back and down my left arm. I have had cardiac testing performed over the past year and have been told that aside from a large number of palpitations, and of course the tachycardia, my heart is "normal". It is by far my most annoying and scary symptom.

Granted, I have not received any medical training but I feel like the doctors are not concerned at all about my situation and I am left to wait it out. It would just be nice to have a doctor say, "I am not concerned about your 36 BPM and this is why" but as we all know, most of the time that is not the case. 10 more days of wearing the monitor before I turn it in...

SusanB: I feel like my cardiologist is not concerned in the least. The conclusion was, "Let's see what this 14 day monitor shows and go from there" I left thinking, and in the meantime, I am to do what exactly?! Very frustrating. My cardio is somewhat familiar with POTS but only on a surface level. CasaHouse: I have days like you are describing. There are days when my heart rate never seems to get out of the 60's but I have a ridiculous number of daily palpitations so I feel like all the skipped beats are the main contributing factor to that. Good luck with your diagnosis and hopefully you will be able to get on the right treatment path. Sarah: Thank you for the encouraging words! I am not able to see any info. on my 14 day heart monitor, it was just the overnight oximeter reading that I could see. My 14 day heart monitor is a ZioPatch, apparently fairly new on the market and it only consists of a computer chip within a patch, there are no wires, no electrodes, or visible reading of any kind. I wish I could see my pulse rate...then again it would become my obsession for the next two weeks! I am just concerned that my heart rate is so incredibly low overnight and that I have to wait it out over the next two weeks until I send the monitor back to the company for results. It is very unsettling but this seems to be my only option at this point.

Over the past month I have had increased trouble with my breathing, feeling as though I am breathing through a straw and gasping at night for air. I was put on a one night nocturnal oximeter and my oxygen level never went below 92% yet I feel like I struggle constantly to breath (day and night). The other absolutely terrifying part of the meter was that my heart rate was between 36-38 bpm every single time I woke up. It seemed to quickly rise into the 90's or above upon waking but this has me completely unnerved and I don't know what to do. My doctor has me on a 14 day heart monitor but it is not the type of monitor that automatically transmits any information. So the doctors will not know what my heart is doing until after I return the monitor...in 14 days. My anxiety is through the roof and my Ativan does not seem to be helping. I had trouble sleeping before, now I really cannot sleep! During the day my heart rate is anywhere from the mid 80's to low 100's and I do have frequent episodes of tachycardia mixed in. This fluctuation seems very dangerous to me. Has anyone else dealt with a low heart rate while sleeping, especially a rate in the 30's? Any tips?

I feel this way constantly. Shortness of breath and appropriate breathing are my biggest struggles. I was put on an oxygen meter for one night and my oxygen level never dropped below 92% (I am actually starting a new post about this) but all day and night I feel like I am breathing through a straw and cannot get air out then have trouble getting air in...I feel like a COPD commercial! During the night, I often wake gasping for air and find myself trying to take deep breaths all day but then have trouble inhaling and exhaling.

I agree with Corina, best to check with your doctor. I have continual, all day palpitations and bigeminy which are combined with chest pain, tightness, shortness of breath, etc, yet my doctor does not seem concerned in the least. It is always best to check with your doctor!