Charlotte1

Ugh.. I wish I could remember which video I recently saw where it talked about similar problems to what Chaos has had. It seems many of the sleep clinics aren't interpreting the info. correctly or when they do, they don't think its significant or relevant to remark on! Usually very abnormal sleep patterns are reported as 'normal'. Apparently its important to go to the 'right' clinic but which those are, I don't know. Neurology based ones versus pulmonary perhaps ? Often clinics are only concerned about apnea. The video mentioned that some home sleep monitors have the ability to catch abnormal sleep patterns and record them for presenting to your doctor! Apparently, Dr. Pocinki liked the Zoe model but although you can still buy units, there isn't customer service affiliated w it anymore so I'm not too excited about that. Anybody familiar with the sleep tracker unit (wrist watch)?

@Katybug- I don't have the hypersomnia but its strange that I did many years ago when i didn't have the cataplexy! So it seems I've had both disorders but not in the same time frame. Early in my marriage there were times I was sitting at the table and my head would literally drop onto my plate! I would just wake up within a few minutes and carry on with dinner although my husband was finished his by then! It was so bizarre to us at that time b/c back then there weren't personal computers and no way to do a quick google searches (I'm dating myself). It never caused a problem for me so I didn't go to the doctor but I'm guessing I had narcolepsy. But what I have going on now resembles the cataplexy without any known triggers (emotion/foods) and without the narcolepsy. Definitely, for me anyway, it is very much a sudden, intense 'physical weakness' of my legs which is very different than the presyncope which involves intense brain fog and a 'drunk' feeling. I must sit on the ground or shuffle to safety as quick as possible. Not sure what treatment is out there for this, especially when not dx ?? Ha, most of the general public will never experience any of the above but its pretty normal for us with dysautonomia to get so many different and odd symptoms.

what about if the blood pressure isn't registering low at the time of the cataplexy? Anyone know what that could be about? Do we just chalk it up to good ol' dysautonomia, again?

@Mytwogirlsrox - I believe I have cataplexy.I didn't know that was the name for it until recently when it started happening again while walking and I found it on google. Its happend now 3x in one week. Its very frightening as I don't have any other symptoms occurring at the time (ie the tachycardia of Pots is under control now and my brain fog issues are intermittent, but hypotension is chronic issue). I've had full out collapses to the ground , but always conscious and the 'feeling' differs for the presyncope I'd experience with POTS. Other times I don't collapse but instead my walking turns into an extremely slow, almost Parkinsonian type of walk and I must shuffle to get back to the house from a short walk. But then yesterday, I just STOPPED suddenly, dead in my tracks, and stood still for a few minutes very conscious of what was happening but couldn't get my legs to step forward. I fear MS but have told I have no brain lesions to support that. Have also wondered about myasthenia gravis but don't seem to have enough symptoms for it to be that either. do you or anybody here know much about what might be going on with symptoms such as what I've described? Could hypoxia from low blood pressure cause symptoms that severe? dx POTS 18 months ago; waiting for my app't re : dx of EDS and MCAS. I am not sleepy during day so doubtful of narclepsy although I do have other sleeping issues. any insight would be appreciated.

First, thanks for your help! When doctors give me the runaround, I feel like giving up so thank you for the encouragement to keep looking for answers! My mother has had medical issues her whole life and as for me, I've been a fainter since a child (vaso vagal syncope) and then @ 54 diagnosed with POTS, 7 yrs after a hysterectomy for endometriosis (I believe I began a slow decent after that). My physiotherapist does not think that my issues are related to deconditioning although certainly it was a problem when I first started becoming mobile again after being almost completely bed bound for 4-5 months(thank-you Mestinon!). My blood pressure has been low my whole life and I've become symptomatic with it gradually as I entered adulthood (ex. extremely spacey episodes, fullness/pressure in head, weakness spells, and more) Most days when I'm feeling not too bad, I take my blood pressure and if its not super low, I go for a walk in the yard and if brain fog/weakness doesn't occur, I venture out for a 20 min.walk. Also, I see the physiotherapist weekly to put joints back into place (hypermobility) and do gentle stretching exercise on a recumbent bed with a Pilates trained instructor. So I am fairly mobile now but not nearly as active as pre-POTS. We do have a stationary bike that I had intended to use in the winter as I prefer to walk outdoors. Because its downstairs, I never thought of using it on the intolerably hot days when I'm not able to wear the compression clothes. Thanks for the indoor bike suggestion. I can barely wear the compression clothing now so I won't be looking into the filling my prescription.When the specialist wrote it he said most people don't keep up with wearing them b/c they are just too uncomfortable (too constrictive and hot). I get the highest compression possibly w/o a script at specialty stores. Endometriosis is an 'autoinflammatory' disease and although I'm uncertain of the distinction between it and autoimmunce disorders, I do think am being affected by AI disorders. I have so many strange neurological symptoms, many which point to Ehlers-Danlos which could explain why my veins are sloppy therefore not allowing normal blood pressure. Also, today I will definitely book an app't with my family doctor and ask for a referral to an immunologist because for the 2nd time in 4 days, my tongue swelled up and became tingly after eating a meal (no new foods) not allowing me to swallow normally and making it difficult to enunciate words properly. And that was despite taking my morning claratin and zantec (MCAS protocol). I had been out for breakfast following fasting bloodwork when it happened so I took a benadryl immediately when I got home. Within a short time, symptoms subsided. I don't know if this is a sudden allergy to foods I've eaten in the past or that symptoms is related to MCAS. but certainly the 3 syndromes (POTS, EDS MCAS) are often seen together. So, it's frustrating and very complex. It will take time for me to get diagnosed, if at all, but I'll post back on this thread if there is something significant to report. Thanks for your all your suggestions. May you all get relief of your symptoms soon!

sorry, i tried to add the link in my post above but it wouldn't work for some reason. If you want to see the article, you'll have to go to my thread. And I should say "Salt MAY play a role in Autoimmune Disease". Sorry if I led anybody astray!

Hi Alex. I just posted and interesting link in my thread 'what to do when midodrine and florinef aren't helping with blood pressure'. The latest research conflicts with the benefit of salt loading. Salt can cause autoimmune disorders. I've provided the link in my latest post on that thread. PLEASE, everyone, I'm not advocating we all stop salt loading!! I'm just wanting to inform you of the latest research and am only saying that the latest data flies in the face of conventional treatment for POTS!!!

@IceLizard, I supplemented my diet with 5gr of salt tablets when I was on the .2 mg florinef. There wasn't enough of an increase in blood pressure to make me want to put up with the increased headaches. I added salt to ALL foods, even fruit and water. My stomach started rebelling and I had to slow down on the salt intake which made me feel more comfortable. I don't take hardly any salt now because the latest research shows there is a link between high salt diets and autoimmune disease! I wonder if it won't be long before salt loading is frowned upon, even by the dysautonomia doctors? Regardless, we all have to make our own judgement calls regarding our treatments. It's never easy Here's the link. http://www.medicalnewstoday.com/articles/257319.php in the meantime, I'm back to wearing compression clothing and an abdominal binder. Sudafed a few times a day also helps. Still, my best recordings show I still can't a systolic above 100 and the diastolic is very low.

Hi, s-pot, ya, its pretty scary having heart rates as low as ours can get. Your story here sounds similar to my POTS story from last summer. I was very bradycardic (36 bpm during night) high 40's - mid 50's in day. When doing PMTTT, hr would rise 40-60 pts which was then confirmed through a neurology autonomic clinic So although my hr wasn't anywhere near the hr of many people that post on dinet, as Alex stated, if it rises over 30, you have POTS. Because I also have vaso vagal syncope and am hypotensive as well, the usual beta-blocker treatment was not an option for me b/c it further decreases blood pressure. I was put on the pyridostigmine (Mestinon) (180 mg. slow release 1/day) and within a few days my postural tachycardia had stopped! What a relief to be able to eventually become independent again. Unfortunately, for me anyway, it hasn't helped much with other neurological symptoms such as intense brain fog and leg weakness. I have tried florinef and midodrine but neither have helped much to increase the hr or bp. Often I get relief with 60 mg pseudophedrine (sudafed) but it only lasts about 2 hrs. I am tired of doctors never taking my issues seriously so I haven't pursued the low heart rate any further but I think I will soon b/c now my diastolic heart rate is becoming lower than my usual low.

i appreciate your responses. I was diagnosed by at a neurology dysautonomia centre and getting that (Canada) was hard enough. But perhaps I can try and talk with a local cardiologist regarding my low blood pressure although its unlikely they'll know much about POTS in my smallish city. No, I am not sick with anything (except sick and tired of dysautonomia!). Bloodwork is fine. Florinef did very little to boost my blood volume despite salt and water loading. I will read more on the Desmopressin and start a thread if necessary to see if anyone has favorable things to say about it. As for the Octreotide, I've thought in the past it might be a good choice b/c of my stretchy veins and lax ligament issues and also b/c it helps with post prandial hypotension which also can be a problem for me at times The problem is it is an injectable drug so I doubt it would ever get prescribed for me - I'm just not close enough to dead yet and my low readings aren't alarming any professionals so they won't prescribe anything other than the most usual. I won't go to my GP to talk about my issues unless absolutely necessary. She always makes me feel worse and knows NOTHING about dysautonomia. So for now, I'll do more research and take sudafed throughout the day. hypertension is not a feared consequence from taking the 3 drugs midodrine, mestinon and sudafed....I'm still lucky if I reach a normal reading. Thanks for offering your help. Onward and upward....

I have already been diagnoses with hypotension and have been hospitalized in the past for it and after finally being diagnosed with POTS, was taken seriously. That in turn led to me trying florinef, mestinon and midodrine, all with varying degrees of success of various symptoms but the low blood pressure continues. Because my issues don't seem to fit into any one box, I'm once again starting to fall by the wayside with the medical community. I'm used to seeing overall low blood pressure readings but the frequency of times I get the especially low diastolic reading is increasing, and that's been while I'm on medication! Yet other times its the systolic alone that's very low. This morning, 1 hr after my taking my midodrine and mestinon my blood pressure was still only 88/60. I fear that the low blood pressure is not getting oxygenated blood to my cells causing the cold flashes, leg weakness and brain fog..memory issues...strange head feeling. I sure don't want my brain to have long term effects of oxygen deprivation! My concern is that something is whacked out with my vascular system as at times my heart rate will be very low as well (in the 40's). None of this seems to concern my neurologist and obviously I'm not impressed that he isn't taking this more seriously. He told me I should seek counseling to help me cope while my lifestyle continues to be altered. Ummm... really? thanks. Ultimately, fighting the cause of these symptoms would be ideal and I'm working towards that, but in the meantime I guess I'll just have to keep researching for a drug that might help raise the blood pressure. The weak legs and on/off dementia is scary! I bought caffeine pills but am afraid to start them bc I've read they can make POTS worse, and I do NOT want to go through that **** again.If anyone knows of other drugs to increase blood pressure, please let me know but anything that may decrease my heart rate further must be avoided. Thank-you.

The tachycardia upon standing (POTS) has been greatly reduced with the help of Mestinon as well as the degree of severity of the dysautonomia symptoms, namely brain fog. My low blood pressure continues though, despite using florinef and midodrine. I cannot take more than my currant dosage of midodrine (3.5 start of day and 5.0mg 3 hrs later) because it occasionally has caused my bradycardia to become significantly worse. My systolic blood pressure is still lowish -averaging 100 but the diastolic is always low, last week there was a 41 reading, today 48. The brain fog, cold to the bone feeling take over when I get readings like that. With my diastolic pressure actually getting worse than it was at my worst POTS episodes last year, is it possible something else is going on with my heart or my veins/arteries( perhaps EDS since I'm very hypermobile) rather than simply accepting that the midodrine is not a good choice for me? I needed 2 florinef tablets to get close to a normal reading but gave me horrible headaches so I had to discontinue. What else is out there for me to ask the neurologist to allow me to trial? I cannot go on a beta blocker b/c of the low heart rate. Unfortunately, he is so immersed in the 'mestinon camp' that when he added the midodrinine to my drug protocol 2 months ago, he told me if that didn't work, I should go to counseling to learn how to cope! What?? Surely there are other drug options out there to raise blood pressure!! Strangely, Sudafed will often (not always) give me the the most normal blood pressure AND pulse values and I'll feel better than with the other drug aids but unfortunately that only last for about 3 hrs. I have no idea why sudafed would work better than the other drug aids. Does anybody else get results like me? I don't think I should take sudafed 3-4 times/day indefinitely . Or should I? Anybody have any ideas? thanks.

I also have bradycardia with low blood pressure. I am finding that sudafed sometimes works for the low heart rate as well as boosting the blood pressure. You might want to try that if you're not hypertensive.

Rama - just read this thread today. Did you continue with the 'coffee' cream experimentation? what were the results?

Frustrating news to report - Well, I won't be doubling my dose of midodrine again. Yesterday I took 5.0mg and 2 hrs later my heart rate was down to 40 (and bp was only 99/68). Although the heart rate improved (took 2 more hours), I felt off all day. And I got the strange psychedelic visions at night with the burning feet that I haven't had in a long time. I don't see where those symptoms would fit in with the earlier bradycardia but they must be related somehow. Perhaps its simply that my dysautonomia kicked it up a notch when triggered by the low heart rate. Turns out that bradycardia is a side effect of midodrine in some people. I'm often dealing with low pulse already so I'm not surprised. I was really hoping to be rid of the binder and socks but looks like I'll be back to those and taking the 2.5 midodrine 3 hrs apart and hope for better bp results (they improved, but weren't 'normal' yet) I'll try the caffeine pills after I'm certain I've recovered enough to try another experiment.

@ Amber - I don't know why the neurologist started me off on such a low dose either. I have not asked him if I can increase it but I'm doing so anyway because the alternative in his words 'to seek counseling'. Nutty advice coming from a specialist. I know what you mean -I've come away from app'ts either uplifted or dejected... depends on which doc I'm seeing. One offers encouragement, every time I see him. The other one...not so much. Hang in there.

@ looneymom - I got my binder at an orthopedic/health supply type store. I think I paid about $30.00 for it. I haven't always worn it, mostly just experimented with it off and on. Recently post prandial hypotension has become quite an issure so I started wearing it a few days ago for most of the day. I did that around the same time I started the midodrine so not sure which is providing the most help. You can look up dj Orthopedics, type abdominal binder in the search box. My particular binder is the 3 paneled one. It's adjusted with Velcro. I would think that Walmart has similar products available.

Sure is !!

Thanks for the info Jackie. I'll look for them at the drugstore but....I may not need them! Today my pressures are much better! I'm making sure to wear the abdominal binder and compression socks daily now, especially at meal times as I have post prandial hypotension along with regular OH. I don't know if its the compression garments or me beefing up the midodrine dosage but my numbers are better and definitely I'm less lightheaded! Yeah!!

Caffeine pills? I never heard of them! I'll have to look into where they can be purchased so that I can give it a try. Thanks!

Thanks everyone for your suggestions and answers. I do already wear compression socks (and abdominal binder before meals) but soon will be doing less of that as the weather gets hotter. The doctors will not put me on a beta blocker b/c of my already very low blood pressure. Taking the pills on an empty stomach has not bothered me (yet) and I will have to continue that route b/c I need the meds into me as soon as possible each morning. If I eat food before 45 min. of getting up, I'm nauseous. Mestinon has not done a thing to help with my slow bowel motility...thats one side effect I was actually looking forward to! Yesterday I took the 2nd MIdodrine dose (2.5) 3 hrs after the 1st dose instead of waiting 4 hrs. It seemed to help a bit which shows me that 2.5mg isn't enough for me. I might just take a double dose tomorrow morning since many people seem to take 5.0 / dose anyway. I'd love to get off the florinef all together eventually...it causes head pressure pain and I've read it can effect bone density with long term use. I'm post menopausal and already facing that. I've never liked coffee. I may try it again though and see what happens. A few years ago, my blood pressure crashed and I passed out when a pain doctor injected marcaine shots into my back. (lidocaine +epinephrine ) so I want to stay away from anything like that - yet I find it strange that pseudophedrine can help my bp to rise without a similar response. Thanks again for your responses!

Hi. I was dx with Pots in January '13 after 8 months of very acute symptoms. First I tried florinef, various dosages and then Mestinon was added to that. The mestinon was what finally allowed me to get out of the house as it completely took care of the tachycardia when being upright. I was almost back to myself although despite an exercise program, I still had PEM. All good for 2 months and then slowly the old symptoms came back, most bothersome being the brain fog and weak legs. I asked the neuro for more mestinon but he preferred I have another ttt to see what's going on. TTT 'ing last week which showed I no longer have POTS.- no surprise there. I do however continue to have very low blood pressure especially after a meal or even a snack- sometimes drops > 30 pts systolic within 10 minutes of eating leaving me lightheaded and even presyncopal. This of course didn't show up on TTT b/c I didn't just eat. He said if the midodrine doesn't help, I should probably go for some counseling!! What?? He told me to discontiue the florinef (causing too much head pressure/migraines anyway), and instead take 2.5 mg MIDODRINE for hours / day and to continue with the mestinon and it would likely do the trick. Well, no...... I still getting systolic pressures of 90-100 with symptoms daily. The MIDODRINE has done nothing at all! When I eat, still dropping to 80's systolic for about an hour. I'm supposed to eat light, yet often. But that's leaving me light-headed all day and unable to go out of house again! Typically I'm bradycardic daily as well, especially by evening. It seems some people here r on MIDODRINE 10mg 2x day. If that is the normal dose, then there's a good chance I can still get better by asking neruo if I can increase the dose. I have tried taking all the dysautonomia meds on an empty stomach very first thing in morning... no difference. the last few days I've added in the florinef b/c I need my BP up but its made no difference. My 87 yr. old mother is failing and I anticipate some stressful decisions will have to be made in the next few days. I really need a better blood pressure to manage whats ahead. I already do all the self help measures and have even added daily pseudophendrine which might bring BP up a bit, but not enough. The only time my systolic is between 100-110 is in the first 45 minutes of rising from bed. I wish docs would work on the CAUSE of my low blood pressure instead of just the symptoms. After all, if the symptomatic relief isn't achieved, it must be all in my head, right??! Any suggestions at all?? thnx.

@ Alex, Sorry for any confusion. Although the mestinon and florineff together have helped immensely (no longer bed/house bound), two months ago I periodically began experiencing a few of my earlier POTS symptoms,mainly cognitive impairment and 'lead legs'. Unfortunately, now they are happening daily and I fear that perhaps soon some of my other horrid symtpoms will come back (tachycardia, slurred speech, collapsing etc). Strangely, the 'brain fog/lead legs symptoms don't happen first thing in the morning like they originally did. Instead, they usually come on after being out of bed about 45 minutes each morning or occasionally it'll not happen until the early afternoon. I've kept activity/food journals but I see no connection to when these symptoms occur. I check my blood pressure and sugar when this happens and they are normal. I've never had visible signs of blood pooling so not sure if that's whats happening although wearing the compression socks and/or abdominal binder makes no difference that I'm aware of (earlier on it did). Although I'm so much better than I was, these symptoms still dictate my day's activities. I cannot plan for anything b/c the 'head fullness feeling, duh like brain fog' and heavy, weak legs can occur with very little warning. I'm already on a 180mg SR tab mestinon with breakfast and I don't know if more than that is typically prescribed/ day? Increasing the florinef is out b/c I'll get more headaches.(tried that) So, what I meant to be asking is - Would adding midodrine to the two drugs that are working relatively well for me be a good choice to request? I understand that it might cause my BP to be too high but what if I just took a small dose (2.5 mg) 1st thing in the morning to see if it can help with the blood flow to the head and lower legs? Or, in your opinion would another POTS drug be more helpful for those particular symptoms that I've mentioned? I greatly appreciate if anyone can offer some suggestions, Charlotte This thread interested me b/c of the mention of Mestinon. Sorry, I didn't mean to hi-jack it with my queries.

Alex and Charlotte, thank-you for replying. Another question - if my blood pressure is already in the normal range (with the help of florinef) would midodrine really be of any more help to me? The mestinon has helped with the neurotransmission issue (and that's where I saw my biggest improvement in symptoms), and the florinef has helped raised my blood pressure into a normal range. Wouldn't the midodrine just be duplicating what florinef is already doing... raising my very low blood pressure to respectable levels? I know that florinef increases blood volume (I was never tested for that, it was just assumed) and therefore blood pressure rises and midodrine is an actual vasoconstrictor which gives the same end result.... raised blood pressure. But since I'm already getting that with the florinef, do you think that there is still reason to try the midodrine? Is there perhaps another medication I should be trying? I'm sure I'm missing something...can someone explain? Thanks

@ Rachel - I will try and get one of my specialists to give me a trial month of midodrine to be taken as needed. I'm thinking likely I would take it in the morning and early afternoon when I have most of my trouble. I'm not sure if he'll want me to first decrease the florinef so as too not have too high a blood pressure. The florinef has brought my pressure from systolic being 80-90's to now 110-120, something I have never experienced before! Although not nearly as bad, I still have cognitive impairment and 'lead legs' come on suddenly late mornings and early afternoons.) First thing out of bed I'm fine, unlike the early days of POTS. So, I need to try a new med and the midodrine seems a logical choice given your experience. Hopefully the specialist will prescribe it and also hoping it does not give me any nasty side effects. Thanks!