Tuesday

For me, when I am too dehydrated I feel super tired, I tend to get many more palpitations/tachycardia, I feel anxious, headachey, woozy, and dizzy. My mouth is dry and my spit just tends to feel thick. I also tend to just crave salt, and it tastes almost sweet to me. Any of these things are indicators for me of not having enough water and/or salt. When I get too much or my blood pressure is too high I feel like my eyes are going to explode, and my sinuses tend to hurt. I feel bloated and under pressure. Also, salt tends not to taste very good to me.

The tingly feeling is normal, and will go away after about a week or so. The headache was probably from not being hydrated well enough.

Do you have difficulty clenching your fists after waking up in the mornings or after a nap? I have this issue and I read somewhere that it's due to whatever mechanism your body uses to keep you from acting out your dreams. Your body paralyzes the muscles to keep you from hurting yourself, and sometimes it does not resolve fully when you wake up.

No theories or insight for you, but just another data point to add to your collection. I have POTS, my rheumatologist was not able to confirm EDS without a genetic test but told me he observed hypermobility and it seemed likely. I have not had any diagnoses for MCAD but have recently started having outbreaks of hives I can't pinpoint. So, whatever boat it is that you're talking about, count me in it.

I've had so many issues with vertigo/dizziness it's ridiculous. I've been in and out of the balance therapy center over the past couple of years with mixed results. They still can't figure out exactly what's causing it, though I've had diagnoses of BPPV on both sides, which I'm told is really uncommon. I believe there has to be some sort of a connection but I haven't found anything concrete yet.

My electrophysiologist has told me to use both water and sports drinks together. She said that relying on just one isn't a good approach, but to use both and add my salt tablets as needed.

Yes, it definitely does for me. Especially palpitations and tachycardia. I have to sleep with about three pillows under me to feel right. My doctor advised me to prop myself up to sleep, not just for that but also to reduce issues with acid reflux.

It's my understanding that it's not just your BP that's important, it's your blood volume, too. I'm on salt tablets, midodrine, and florinef. Before I added the florinef the salt and midodrine were helping, but they wore off very quickly and I crashed at night when I wasn't taking them. The florinef helps your body retain the salt, and seems to help extend the benefit of the midodrine and salt for a longer period of time. I have found that taking all three gives me a much greater outcome than any one of them by themselves.

I had to stop using hormonal birth control because it was giving me horrible migraines every month like clockwork. I do find that my POTS symptoms are much worse on my period, but I would rather deal with that over a bad migraine any day!

Yeah, most of my weekends are like that. I push through the week as best I can, but a normal Saturday or Sunday for me means anywhere from 14-16 hours of sleep each day.

Without midodrine, 90/60 is normal for me. On midodrine I'm pretty close to 120/80, sometimes slightly higher, but it dips to 110/70. On a bad day, even with midodrine my pulse pressure narrows to around 25, so I get readings like 116/90.

My bp without medication is generally pretty low, regardless of whether I'm laying, sitting, or standing. With the midodrine my bp has been pretty steady and close to normal. But, it generally drops a little when I stand up.

Just got back from a horrible appt with my cardiologist and I don't know what to do. Back in July I had a 30 day cardiac monitor to evaluate me for POTS. I've been having really wild fluctuations with my heart rate. Anywhere from a low of 37 just sitting watching tv to a high of 140 walking across the parking lot. My resting hr has been between 44-55, and I have regular spikes of 50+ points when I get up and move around. I've had debilitating fatigue, dizzy spells, and pre-syncope that has kept me out of work many days over the past few months. In addition, a few weeks ago I had a severe allergic reaction to something and my gp took me off all meds until it cleared to be sure that I wasn't allergic to them. I went in today for my follow up and to get the results of the monitor, and to talk about what to do about Midodrine being pulled. I take 10 mg five times a day, along with salt tabs. I don't ever see the EP, just the nurse practitioner. I've had some unpleasant interactions with her before, but today takes the cake. When she came in and asked me how I was doing, I started telling her about my extreme fatigue (I had actually fallen asleep in the room waiting for her). She interrupted me to tell me that yeah, we're all so tired because we're all so busy these days. Um, I wasn't making small talk. She then goes on to say, "Wait til you have kids, then you'll really know what tired is!" I wanted to punch her in the mouth. She then went on to say that my monitor didn't show anything abnormal. Just PVCs, sinus rhythm and sinus tachycardia, which are all normal. She said it showed no bradycardia, which is ridiculous because I can verify by my heart rate monitor (chest band) that I had many instances of a very low heart rate. The monitor went off automatically and recorded them. I verified not only by my watch monitor but also by just feeling my pulse. I pressed her again, because I was in such disbelief. I almost wonder if they mixed up my results with someone else's. She said I could do another 30 day monitor if I wanted but there's no way in **** I'm putting myself through that again. She dismissed my concern and said again there was nothing abnormal, and that I was just having a bad time because of the heat and because I'd gone off my meds for a few days. Told me that hives were just one of those things everyone gets, not to worry about it. The last time I was there she had mentioned maybe needing to put me on a beta blocker so I asked her about it. She said she didn't like beta blockers, they didn't really seem to help, but said if I wanted to I could try it again. I said no way in ****. So, she is putting me on florinef and I go back in a couple weeks for bloodwork. I just feel that this whole visit was absolutely ridiculous. She spent the whole time dismissing my concerns and condescending to me. The last time I was there she told me I just need to "slow down," as if that would fix everything. I got back out to my car and couldn't stop crying. I don't know what to do. I requested a complete copy of my records and I will pick them up when I go in for bloodwork in a couple weeks. I am just at my wits end and don't know where to go from here. Oh, and on top of this she didn't know anything about Midodrine being pulled, even though I had called in two weeks ago to tell them and get a 90 day supply. She just kind of waved it off saying, "Yeah, I dunno what's going on with that." I had to tell her the details, how the FDA requested they pull it because of the inconclusive studies and Shire decided to stop selling it because it wasn't profitable. I knew more than she did! When I asked her what the plan was she didn't really have anything to tell me. Just that we would "figure it out when the time came." Um, hasn't the time come? I want to just scream. I'm so scared and angry and confused.

I always feel better after a cigarette. It raises your blood pressure, so that may be it.

Here is a link to Lynn's site with information about contacting Erin Brockovich: http://delivermeministries.org/node/136

Strangely enough, the more sleep I get, the worse I feel, too. I tend to do best with around 5-6 hours sleep as opposed to a full 8. I'm still tired at the end of the day, but the brain fog, dizziness, soul-crushing fatigue, tachycardia, and palpitations seem to be better. Don't know why

Several people on Facebook are trying to get consumer advocate Erin Brockovich to help take over this case, and petition the FDA to get the drug back on the market. If you're on Facebook, search for "Join Lynn & Erin Brockovich for proamatine/midodrine." You can email Erin Brockovich from her website, just click the big yellow HELP button: http://www.brockovich.com/index.html Make sure you mention ProAmatine/Midodrine.

None of my doctors have ever used the term Dysautonomia. They always refer to my diagnoses: Neurocardiogenic Syncope, Mitral Valve Prolapse, Inappropriate Sinus Tachycardia, Orthostatic Hypotension, POTS. For me though, it's just easier to say Dysautonomia.

Yeah, I agree. There are days when I can choose to push myself, but other days where there is no choice at all - I am simply down for the count no matter what I do!

I have really bad days with normal bp too! I don't know how to explain it. I usually get very dizzy/lightheaded on my bad days, along with the fatigue.

It's a long shot, but I used to work for several lobbying groups. I am contacting some of my former bosses and coworkers to see if they know of anyone else I can contact to get this issue out in front of people.

Here is the message I am sending to my congressmen, in case anyone wants to copy or use something similar: "I am writing regarding the recent decision from the FDA to withdraw the hypotension medication ProAmatine (Midodrine) due to failure on the part of the maker to prove its efficacy. This is the first time the FDA has enforced such a case. The drug maker has decided that the bureaucracy is too much and will be discontinuing the drug next month. This medication is used to treat low blood pressure, and is the only drug available for this purpose. There are no concerns about the drugs' safety. I and many other patients rely upon this drug to live a normal life. Without it, we are unable to stand or walk without passing out, cannot hold jobs, take care of our families, or care for ourselves. There is no question about the safety of this drug, and its benefits are life-changing. Whether the drug is effective for a given patient should be between the patient and their doctor, provided the drug is safe. Without access to this drug, hundreds of thousands of patients are facing the prospect of losing their jobs, their ability to care for family, participate in hobbies, and function without disability. I strongly urge you to help your constituents fight to retain access to a medical treatment that is vital to maintaining their independence. Thank you for your service. "

I'm not sure who to contact, but I am going to write letters to my congressional representatives, at a minimum. I have already contacted the FDA. I wonder if there are other consumer advocates groups that could be helpful?

I contacted the FDA and here is the reply I got from DRUGINFO@fda.hhs.gov "Thank you for writing to the Division of Drug Information in the FDA's Center for Drug Evaluation and Research. FDA proposed to withdraw approval of the drug midodrine hydrochloride, used to treat the low blood pressure condition, orthostatic hypotension, because required post-approval studies that verify the clinical benefit of the drug have not been done. To date, neither the original manufacturer nor any generic manufacturer has demonstrated the drug's clinical benefit, for example, by showing that use of the drug improved a patient's ability to perform life activities. FDA today issued a Proposal to Withdraw Marketing Approval and Notice of Opportunity for a Hearing to the companies that manufacture midodrine. This is the first time the agency has issued such a notice for a drug approved under the FDA's accelerated approval regulations. Shire, the maker of the brand name drug, must respond to the FDA in writing within 15 days to request a hearing. If the company fails to do so, the opportunity for a hearing will be waived. Sponsors of generic versions of midodrine will have 30 days to submit written comments on the notice. If, after considering any relevant submissions, the FDA continues to believe that withdrawal of approval is warranted, approval of all midodrine products, including generic versions, will be withdrawn. The agency is working with the drug manufacturers to develop an expanded-access program to allow patients who currently receive the drug to continue to receive it. On a case-by-case basis, expanded-access programs allow the use of a drug outside of a clinical trial to treat patients with a serious or immediately life-threatening disease or a condition that has no comparable or satisfactory alternative treatment options. You may find additional information at: http://www.fda.gov/NewsEvents/Newsroom/Pre...s/ucm222580.htm Thank you for your comments regarding this issue. Best regards, Drug Information RL Division of Drug Information Center for Drug Evaluation and Research Food and Drug Administration For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter at FDA_Drug_Info This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed."

I just talked to the nurse, I don't know if they have even heard about this yet. Didn't sound like she knew anything. I am waiting for my doctor or the nurse practitioner to call me back for more info.